irsf conference program final 2011 050911
TRANSCRIPT
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IRSF 2011 Rett Sydrme Educati & Awareess Cerece
ResearchReality
CHEERS TO
to
May 2730, 2011 Bst, MA
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Dear Cerece Attedees,
Welcme t ur 27th Rett Sydrme Educati
ad Awareess Cerece. Whether this is your rst
conerence or your twenty-seventh, we welcome you
to the single most important meeting o the year hosted
just or you: the amilies and proessionals seeking a
shared path towards healthier, more ullling lives or our
children with Rett syndrome. You have come to Boston
rom across the U.S. and rom every corner o the world
because you desire to know more, you are curious about
whats new, and you seek to meet others sharing in your
dreams owhat will be. While here, we know you will nd
the inspiration, the motivation and the know-how to be
the best parent, advocate or caregiver you can be or your
child. We have brought you together to meet with the
experts, and with each other, to accomplish these goals,
all while having a bit o well-deserved un!
Take the time to read through the program careully, and
plan your session attendances thoughtully. No doubt you
will eel hard-pressed to get to every session. We wouldnt
have done our jobs i you didnt. Dont worry! You will be
able to purchase on-demand video access to the Saturday
sessions, and audio les and handouts o the Sunday
sessions, within weeks via the IRSF website. Be sure to join
us or the wonderul Tribute Reception onsite Saturday
night. This is when we will let our hair down and lit our
glasses to Cheer and Celebrate our shared purpose, and
the progress in our commitment to bringing Research
to Reality.
While here, take time to step out and visit the sites o
Boston. Let the heart and history o this great city teach
you that the uture is ours to shape, that change and
progress will happen through the collective orce o our
shared vision, ingenuity and spirit. I you need help nding
a great restaurant, or planning outings to local points o
interest, check your registration materials or ideas, or visit
the concierge desk. Friendly IRSF sta and volunteers will
be at the Registration/Help Desk throughout the weekend
to answer questions and point you in the right directions.
Introduce yoursel to our wonderul Speakers, Exhibitors,
Board o Directors, Family Advisory Board members,
Regional Representatives and other attendees. The value
o this conerence is as much about the relationships you
will grow as it is about the tools and inormation you will
take home.
What lies behind us and what lies beore
us are but small matters compared to
what lies within us. Ralph Waldo Emerson, Author, Boston, MA
We welcme yu
ad celebrate yu
ad yur childre.
Paige Nues
Conference Director
iRsF
Stephen Bajardi
Jennier Endres
Jenni Grammer
Mary Joyce Griin
Lisa Hayden
Tony Horton, PhDJim Keller
Melissa Kuhlman
Jane Lane, RN
ORgaNiziNg
COmmittee
Kate Barnes
Larry Fallon
Irene Gladstone
Bill Johnson
Jane Joyce
Dr. Omar Khwaja
Linda McInnis
Maria McTernan
Deberah Patterson
Diane Ross
Maryann Sabo
Edith Turner
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DAY TIME SESSIon SPEAKERSESSIon
TYPE/LoCATIon
Fri-Mon
Fri: noon-8:00 pm
Sat: 7:30 am-6:00 pmSun: 7:30 am-5:30 pmMon: 8:00 am-noon
Registration/Help Desk/Speaker andVolunteer Check-In
IRSF Sta andVolunteers
Mezzanine(2nd Floor) Level
Sat-Sun
9:00 am -5:00 pm
Exhibitor and Inormation Booths:
Assistive technology, adaptive equipment,
undraising, clinics, IRSF regional
representatives and more
Exhibitors and IRSFMezzanine
(2nd Floor) Level
Sat-Sun
8:00 am -5:00 pm
Bookstore: Awareness items,
educational materials.
IRSF Sta and
VolunteersHancock
Fri-Sun
Speaker Prep Room IRSF Faireld
DAY TIME SESSIon SPEAKERSESSIon
TYPE/LoCATIon
FriMay 27
Noon-8:00 pm Registration opens IRSF Sta Mezzanine
(2nd Floor) Level
12:15 pm- 4:00 pmLab tour: LIMITED SPACE. Pre-registration
through IRSF required. Meet in hotel lobby
near Concierge Desk at 12:15pm
Drs. Michela Fagiolini,
Cliord Wool, Scott Pomeroy,
Omar Khwaja, and Chuck
Nelson. Hosted by Childrens
Hospital Boston Trust and
IRSF
Childrens Hospital Boston: F.M.
Kirby Neurobiology Center,
Neurodevelopmental Behavioral
Core, Clinical and Translational
Study Unit (CTSU), Laboratory o
Cognitive Neuroscience Boston
6:00 pm Welcome ReceptionHosts: IRSF Board
o Directors Georgian Ballroom
7:00 pm Welcome and Orientation Address Paige Nues, IRSF Georgian Ballroom
8:00 pm-9:00 pmCrackerbarrel Breakout Sessions:
Conerence Hopes and Expectations
3 yrs and under Paige Nues Arlington, 2nd oor
4 - 7 yrsErica Robertson,
Carole CushmanBerkeley, 2nd oor
8 16 yrs Cordelia Albanese Clarendon, 2nd oor
17 yrs and over Cliord and Judy Fry Georgian, 2nd oor
Grandparents Jennier Endres Statler, 2nd oor
Rettnetters and FacebookersShirley Hurlburt,
Cathy MerrillFaireld, 2nd oor
Spanish Speakers Maggie Wurm Stuart, 4th oor
Proessionals Evie Lynn Swan White Hill, 4th oor
CDKL5 Katheryn Elibri-Frame St. James, 4th oor
IRSF 2011
Cerece Prgram FRiday, may 27 mONday, may 30 Please check registration/help desk or conrmed session times and room assignments, all session times
are Eastern Time Zone. See program back cover or conerence oor plan. Program is subject to change.
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DAY TIME SESSIon SPEAKERSESSIon
TYPE/LoCATIon
Sat
May 28
7:15 am-
12:30 pmRespite Rooms Open
Lexington and Newbury,
4th Floor
Morning7:30 am
Understanding RTT and
other
MECP2 Disorders
Alan Percy, MD, Director UAB
Rett Center at the University o Alabama
Civitan International Research Center
Imperial Ballroom
General Session and
Live Webcast
8:30 amParents Experiences with
Genetic Testing or
Rett syndrome
Christine Delaney, MS,
Genetics Counselor
Imperial Ballroom
General Session and
Live Webcast
8:45 am IRSF Welcome AddressKathryn Kissam, IRSF Board Chairman, and
Steve Bajardi, IRSF Executive Director
Imperial Ballroom
General Session and
Live Webcast
9:15 am
ExhibitorArena
Open
9:15am
5:00pm
Current State o
Translational Research
Tony Horton, PhD, Chie Science Ofcer,
IRSF,Jefrey Neul, MD, PhD, Baylor Collegeo Medicine, and Omar Khwaja, MD, PhD,
Director Rett Syndrome Program, Childrens
Hospital Boston
Imperial BallroomGeneral Session and
Live Webcast
10:00 amKeynote Motivational
Address:
YES YOU CAN
Dick Hoyt o amed Team Hoyt
Imperial Ballroom
General Session and
Live Webcast
10:30 am Rereshment Break and Exhibitor Arena
10:45 amWhat Goes Right
with Her Brain
Aleksandra Djukic, MD, PhD, Director, Rett
Syndrome Center, Albert Einstein College o
Medicine at Monteore
Imperial Ballroom
General Session and
Live Webcast
11:30 amCommunication
at All AgesSusan Norwell, MS Ed
Imperial Ballroom
General Session and
Live Webcast
12:15 pm Lunch (on your own) and Exhibitor Arena. Respite rooms closed
1:30 pm-5:45 pm
Respite Rooms OpenLexington and Newbury,
4th Floor
Aternoon1:45 pm
Sibling PanelBrian Skotko, MD, MPP, Clinical ellow in
genetics, Boston Childrens Hospital
Imperial Ballroom
General Session and Live Webcast
2:30 pmNeurology:
Epilepsy
Ann Marie Bergin, MB MD, BCH, BAO,Epilepsy Specialist, Rett Center, Childrens
Hospital Boston
Imperial Ballroom
General Session and Live Webcast
3:00 pmThe Importance o
Therapies and
Rehabilitative Medicine
Donna L. Nimec, MD, Pediatric Physical
Medicine & Rehabilitation Specialist,
Childrens Hospital Boston
Imperial Ballroom
General Session and Live Webcast
Cerece PrgramFRiday, may 27 mONday, may 30Please check registration/help desk or conrmed session times and room assignments all session times
are Eastern Time Zone. See program back cover or conerence oor plan. Program is subject to change.
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DATE TIME SESSIon SPEAKERSESSIon
TYPE/LoCATIon
Sat
May 283:30 pm
ExhibitorArena
Open
9:15am
5:00pm
Rereshment Break and Exhibitor Arena
3:45 pm Endocrinology
Ingrid A. Holm, MD, MPH, Director,
Phenotyping Core, Program in Genomics,
Divisions o Genetics and Endocrinology,
Children's Hospital Boston
Imperial Ballroom
General Session and
Live Webcast
4:20 pm GastroenterologyKathleen Motil, MD, PhD
Pediatrician and Gastroenterologist, Blue
Bird Rett Center BCM, TCH
Imperial Ballroom
General Session and
Live Webcast
5:00 pmWell Child and Adult
Care Overview
Jane Lane, BSN, RN, University o Alabama
and IRSF
Imperial Ballroom
General Session and
Live Webcast
5:45 pm Respite Rooms Close Lexington and Newbury, 4th Floor
5:45 pm Dinner (on your own)
7:30 pm Tribute Reception Hosted by IRSF Georgian Ballroom
Failure is impossible. Susan B Anthony
IRSF 2011
Cerece Prgram FRiday, may 27 mONday, may 30Please check registration/help desk or conrmed session times and room assignments all session times
are Eastern Time Zone. See program back cover or conerence oor plan. Program is subject to change.
27 Years Carig
2011 Cheers to Research to RealityBoston, MA
2010 Aint No Mountain High EnoughColorado Springs, CO
2009 Celebrating the Torch WithinLeesburg, VA
2008 Together We Are BetterChicago, IL
2007 Reach Me, Teach MeAtlanta, GA
2006 Bridges o HopeSan Francisco, CA
2005 Trails to DiscoverySan Antonio, TX
2004 Believe in Better DaysBaltimore, MD
2003 Ship Shape or CaregiversBahamas
2002 EmpowermentChicago, IL
2001 PossibilitiesWashington, DC
2000 Hitting the JackpotLas Vegas, NV
1999 Meet Me in St. LouisSt Louis, MO
1998 Grass RootsCharleston, SC
1997 Keeping AfoatBahamas
1996 Spirit o 96Boston, MA
1995 A Road Less TraveledMinneapolis, MN
1994 A Decade o CaringChicago, IL
1993 Stepping StonesSan Diego, CA
1992 New HorizonsSan Diego, CA
1991 Up, Up and AwayDenver, CO
1990 Family TiesWashington, DC
1989 Hope or TomorrowWashington, DC
1988 Rett Families ConerenceHouston, TX
1987 RS Diagnosis & ManagementHouston, TX
1985 (November) Rett: A New SyndromeBaltimore, MD
1985 (January) No Longer AloneBaltimore, MD
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DATE TIME SESSIon
Sunday
May 29
RESEARCHCOMMUNICATION
AND SCHOOL
MEDICAL ISSUES
AND THERAPIES
FAMILY
FOUNDATIONS
FUNDRAISING AND
ADVOCACY
7:45 am-
12:30 pmRespite Rooms Open Lexington and Newbury, 4th Floor
8:00 am
What is DNA?
(lab demo limited to a
maximum 25
attendees) Tony
Horton, PhD, Chie
Science Ofcer, IRSFARLINGTON
Emergent Literacy
and Communication
Susan Norwell, MS Ed
STATLER
Conductive
Education:
A Therapeutic
Approach
Eleonora Tamasne
MA, QCS, QTS, ETBERKELEY
Entender RTT y Otros
Trastornos MECP2
en espaol Alan
Percy, MD, Director
UAB Rett Center at the
University o Alabama
Civitan International
Research Center,
Maggie Wurm, IRSFBilingual Representative
interpreting
(90 minutes)
CLARENDON
9:00 am
Exh
ibitorArenaOpen
9:15am
5:00pm
What Happens in
Rett Syndrome at a
Molecular Level:
Epigenetics and
Assay Development
Christopher Wynder
PhD, Schulich School o
Medicine, University
o Western OntarioARLINGTON
Simple Solutions or
Daily Problems
Karen Patterson, Special
Educator, Biloxi, MS
STATLER
Physical Therapy
Barbara Deluca, Physi-
cal Therapist, Cotting
School, MA
BERKELEY
Fundraising
How-To
WorkshopJennier Endres, IRSF
and Jenni Grammer,
IRSF
PLAZA BALLROOM
10:00 am Rereshment Break and Exhibitor Arena
10:15 am
What Happens in
Rett Syndrome at
a Systems Level:
Neurobiology o RTT
Michela Fagiolini, PhD,
F.M. Kirby Neurobiol-
ogy Center, Childrens
Hospital and Harvard
Medical School
ARLINGTON
Mid Tech Usage and
the Literacy Assess-
ment Susan Norwell,
M.S. Ed. and Judy
Lariviere, M.Ed., OTR/L,
Communication Special-
ist, Rett Clinic, Oakland
Childrens Hospital
STATLER
The Maturing
Woman with Rett
Syndrome: From
Puberty to
Menopause Jane
Lane, BSN, RN,
University o Alabama
and IRSF
BERKELEY
Expression and
Movement
Through Dance
Pro. Carlinhos
Faustini, PEAMA, Brazil
GEORGIAN BALLROOM
Advocacy 101
Stephen Bajardi,
Executive Director, IRSF
CLARENDON
11:15 am
Researcher
Panel Q&A
Drs. Horton, Percy,
Neul, Wynder, and
Fagiolini
ARLINGTON
Making Eye Gaze
Technology a Reality:
The Road rom Trials
to Conversations
Judy Lariviere, M.Ed.,
OTR/L, Communication
Specialist, Rett Clinic,
Oakland Childrens
Hospital (90 minutes)
STATLER
In Common: Music
(Therapy)
Donna Chadwick,
Music Therapist, MA
BERKELEY
Special Needs
Wills and Trusts
Donald Freedman,
Rosenberg, Freedman
& Goldstein LLP and
John W. Nadworny,
CFP(r), Bay Financial
Associates LLC
PLAZA BALLROOM
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Cerece Prgram FRiday, may 27 mONday, may 30 Please check registration/help desk or conrmed session times and room assignments all session times
are Eastern Time Zone. See program back cover or conerence oor plan. Program is subject to change.
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IRSF 2011
Cerece Prgram FRiday, may 27 mONday, may 30Please check registration/help desk or conrmed session times and room assignments all session times
are Eastern Time Zone. See program back cover or conerence oor plan. Program is subject to change.
DATE TIME SESSIon
Sunday
May 29
ExhibitorAren
a
Open
9:15am
5:00pm
RESEARCHCOMMUNICATION
AND SCHOOL
MEDICAL ISSUES
AND THERAPIES
FAMILY
FOUNDATIONS
FUNDRAISING AND
ADVOCACY
Lunch
12:30 pm
1:30 pm
Lunch served in IMPERIAL BALLROOM and Exhibitor Arena open (Respite Rooms closed during lunch)
12:40 pm
1:30 pm
Regional Representative Meeting 12:40 pm 1:30 pm with Jennier Endres and Lisa Hayden
PLAZA BALLROOM
1:30 pm-
6:00 pmRespite Rooms Open Lexington and Newbury, 4th Floor
Ater-
noon
1:45 pm
Ways to Make it
Go Right: A Look
at IGF-1 and otherSmall Molecules
Mriganka Sur, PhD,
Paul E. Newton
Proessor o
Neuroscience Head,
Dept o Brain and
Cognitive Science, MIT
and Omar Khwaja,
MD, PhD, Director Rett
Syndrome Program,
Childrens Hospital
Boston
ARLINGTON
IEP Panel Discussion:
Your Real-Lie IEPs
(90 min)
STATLER
Nutritional Manage-
ment o Children
with Rett Syndrome
Gail Seche, MMSc, RD,
CSP, Rett Syndrome
Clinic, Oakland Chil-
drens Hospital, CA
BERKELEY
Transition toAdulthood
and Community
Programs
Donald Freedman,
Rosenberg, Freedman
& Goldstein LLP and
Alan K. White
Director o Residential
Alternatives TILL, Inc.
(90 min)
PLAZA BALLROOM
2:45 pm
How to Search Out
and Critically Read
Research Articles
Kate Barnes, BSc,
Research Coordinator
and Heather OLeary,
BSc, Biomedical
Engineering Research
Scientist, Rett
Syndrome Program,
Department o Neurol-
ogy, Childrens HospitalBoston
ARLINGTON
To Sleep,
Perchance to Dream
Sleep Disorders in
Rett Syndrome
Judy Barrish, RN, Blue
Bird Rett Center Baylor
College o Medicine
BERKELEY
Fostering Friendships
Diane Ross, MS, LCPC,
Educator,Therapist
and Parent
CLARENDON
Strollathon:
The IRSF Signature
Fundraiser
Jennier Endres, IRSF
and Jenni Grammer,
IRSF
EXETER
Clinical Features and
Current Research
CDKL5 and Atypical
Rett Syndrome DavidFrame, PharmD, IFCR
GEORGIAN BALLROOM
3:30 pm Rereshment Break and Exhibitor Arena
3:45 pm
Accessing the
General Education
Curriculum
Mick Ross, MS and
Diane Ross, MS, LCPC,
Educators and Parents
STATLER
Creating a Vision
Elaine Rabbitt,
Federation or Children
with Special Needs
ARLINGTON
Dads Panel
GEORGIAN BALLROOM
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DATE TIME SESSIon
Sunday
May 29
ExhibitorArena
Open
9:15am
5:00
pm RESEARCH
COMMUNICATION
AND SCHOOL
MEDICAL ISSUES
AND THERAPIES
FAMILY
FOUNDATIONS
FUNDRAISING
AND ADVOCACY
4:45 pm
How Do Clinical Trials
Happen? An Inside
Look at the IGF-1
Clinical Trial - Omar
Khwaja, MD, PhD,
Director Rett Syndrome
Program, Chidrens
Hospital Boston
GEORGIAN BALLROOM
5:30 pmFarewell and Closing Remarks Paige Nues, IRSF
GEORGIAN BALLROOM
6:00 pm Respite Rooms Close Lexington and Newbury, 4th Floor
Monday
May 309:00 am
Crackerbarrel Breakout Sessions: Conerence Learnings and Takeaways
STATLER
12:00 pm Help Desk and Bookstore Close See You at World Rett Syndrome Congress, New Orleans, June 2012!
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Cerece Prgram FRiday, may 27 mONday, may 30Please check registration/help desk or conrmed session times and room assignments all session times
are Eastern Time Zone. See program back cover or conerence oor plan. Program is subject to change.
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Crackerbarrels are inormal chat groups. There wontbe any crackers, but its guaranteed to be a barrel oriendship and warmth. Gather in groups by your childs
age, as Grandparents, Proessionals, Spanish speakers, or as
caregivers o children with a CDKL5 mutation. Or, you may
want to join the Rettnetter/Facebooker Crackerbarrel to
give a hello and a hug to your online riends. This is a
wonderul time to meet others in a casual atmosphere to
talk things over. Move rom one group to another i you
would like to.
Bkstre in the Hancock Room is where youll nd tee shirts,hats, Handbooks, and lots o other Rett Syndrome awareness
items o interest. Heres your chance to pick up a souvenir or
nd a git or that special teacher, caregiver or loved one.Checks and credit cards are welcome.
Help ad directis can be ound at the Registration Desk orthe Bookstore. IRSF Sta will be wearing IRSF name tags and
are ready to assist you. Board Members, Regional
Representatives, Family Advisory Board members and
Speakers will be also be identied by name badge or colored
ribbons that identiy their roles throughout the meeting.
Dont hesitate to ask; thats what were here or!
Sessis, on a tender note, are only or adults and childrenover 12 who have paid a conerence ee. Please wear your
conerence badge at all times. The sessions are proessionallytaped and require minimum noise level in meeting rooms.
Please close doors quietly with consideration or speakers
and other attendees and limit noise in hallways outside
the session rooms. Please set cell phones to silent or
vibrate mode.
Sessi Recrdigs ad Sessi Haduts Each session willbe proessionally recorded. Video les (MP4s) o the Saturday
sessions and MP3s (audio les) o the Sunday sessions will
be available or purchase ater conerence on the IRSF online
store ound at www.rettsyndrome.org or a per-session price
with a group discount or the whole set. These are best paired
with session slides and handouts. We will post all the materialsthat our speakers can permissibly share to the website within
a ew weeks ater conerence.
Diig ptis are plentiul in Boston. Many wonderulrestaurants at all price ranges are onsite or within steps o
the Boston Park Plaza Hotel. Check your registration packet
or a listing o avorites by our Boston-area parents, or with the
hotel Concierge. I you paid a FULL REGISTRATION or have a
SCHOLARSHIP, please enjoy a light reception Friday evening;
Continental Breakast and morning/aternoon break service
Saturday and Sunday; coee, dessert and cash bar at the Tribute
Reception on Saturday night (ticket required, included in your
registration materials); and lunch on Sunday (ticket required,included in your registration materials). ONE DAY REGISTRATION
includes Continental breakast and morning/aternoon break
service or that day. In addition, one (1) Tribute Reception ticket
is included or the one-day Saturday attendee. One (1) lunch
ticket is included or the one-day Sunday attendee. Please keep
track o your Tribute Reception and Sunday lunch tickets as
they are non-replaceable, or pass to a riend i you wont be
attending as they are non-reundable.
Respite is available or a limited number o children and adultswith Rett Syndrome by pre-registration and or a nominal ee
in the Lexington and Newbury Rooms on the 4th oor.
Visitations open only to parents/caregivers o the childrenregistered in Respite and authorized volunteers. Check with
the registration desk or details. We are pleased to oer this or
the 2nd time ever at our annual conerence, and appreciate
your understanding and eedback while we develop this
onsite support system.
Evaluati Frms are important to help us improve ourconerence year-over-year. Please complete the conerence
and session evaluation survey orms online. The link will be
emailed to you ater conerence.
Irmati
Registrati opens on the Mezzanine (2nd Floor) Level at noon on Friday. Pickup your registration materials, badge, bag, photobutton, Tribute Reception ticket and Sunday lunch ticket. Dont orget to drop o a Rae item, and/or buy Rae tickets.
IRSF 2011
Patience and perseverance have a magicaleect beore which difculties disappearand obstacles vanish.John Quincy Adams
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Special Evets
Tribute Recepti Saturday night in the Georgian Ballroom(Mezzanine 2nd Floor Level) is our chance to pay tribute to
our special angels, and to thank the many people who have
made our success possible. The highlight o the evening is a
music video tribute to our girls. You are guaranteed to enjoy itall, and there will be un or everyone. Everyone has a chance
to win in our exciting Boston Conerence Rae, or just settle
in, enjoy the special entertainment; take time to chat with old
riends and meet new ones. Tickets are included with your
paid ull conerence ee, and additional guests are invited to
purchase tickets at the Registration Desk or $15 per person
while available. Our girls and women with Rett Syndrome
are welcome at no charge. Coee and dessert will be served.
Cash bar.
Bst Cerece Rafe You are sure to nd somethingyou cant live without in the collection o items up or Rae!
Shop the Rae items on display Saturday at the Rae
tables throughout the Mezzanine 2nd Floor Level hallways.
Heres how it will work this year: purchase Rae tickets at
the Registration desk or rom one o our wandering ticket
selling volunteers throughout the day Friday and Saturday,
then drop your ticket(s) into the box o the item(s) you
hope to win. The more tickets you put in the box, the better
your chances o winning that item! Rae winners will be
announced Saturday night at the Tribute Reception. All
proceeds benet Rett Syndrome!
Additial Prgrams ad Activities
Childres Hspital Bst Lab Tur: 360 Degree Apprach t
Rett Sydrme Basic t Traslatial ad Cliical StudiesDrs. Cliord Wool and Scott Pomeroy will rst introduce
the F.M. Kirby Neurobiology Center and the Neurology
Department respectively. Drs. Fagiolini, Khwaja and Nelsonwill then summarize their highly integrated collaborative
eort in understanding and treating Rett Syndrome. A brie
visit to the F.M. Kirby Neurobiology Centers laboratories
and the up-coming Neurodevelopmental Behavioral Core will
ollow. We will then transer to the Clinical and Translational
Study Unit (CTSU) to see ongoing RTT clinical trials and
nally to the Laboratory o Cognitive Neuroscience and
watch ongoing research. Light rereshments will be oered.
Transportation between the hotel and the hospital and within
the hospital acilities will be provided. LIMITED SPACE.
Pre-registration through IRSF required. Friday afternoon
Exhibitrs Visit the Exhibitor Arena in the Mezzanine 2nd Floorlevel hallways or a hands-on look at communication devices,adaptive equipment, and more throughout Saturday and
Sunday. Enclosed in your registration packet is an Exhibitor
Arena Stamp Card. Visit an Exhibitor, get a stamp. Fill your
Stamp Card, turn it in at the Registration Desk, and you will be
entered to win a special prize drawing at the Sunday Closing
session. SaturdaySunday
Helpig Hads Keepsake Ad Jural Look through theincredible journal enclosed in your registration packet and read
the heart-warming tributes and messages o hope submitted
by Rett Syndrome amilies and riends. This is as close as we
come to a Rett Syndrome Yearbook we hope you enjoy!
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Sessi Descriptis
Accessig the Geeral Educati Curriculum - Mick andDiane Ross believe that all girls with Rett Syndrome are
capable o learning and benetting rom having access to a
wide variety o curriculum and educational experiences. This
session is about adapting the regular education curriculumor girls with Rett syndrome, preschool through college. A
variety o strategies and practical approaches to accessing
and adapting regular education curriculum to meet the
needs o girls with Rett Syndrome will be presented.
Sunday afternoon
Advcacy 101 Steve Bajardi, IRSF Executive Director, willconduct an inormal discussion on the state o advocacy in
Washington DC and within the NIH, the movement away rom
earmarks, and the strategies we anticipate will be necessary to
secure Rett Syndrome rare disease translational research
unding. Sunday morning
Cliical Features ad Curret Research: CDKL5 ad Atypical
Rett Sydrme Mutations in the X-linked cyclin-dependentkinase-like 5 (CDKL5) gene have been identied in patients
with Rett syndrome, with the predominate eatures o
generally intractable early-onset seizures and mental
retardation. Overall, the characteristics o CDKL5 are similar to
Rett syndrome, however most patients diagnosed with a
CDKL5 mutation do not have a MeCP2 mutation. This program
will describe characteristics o patients aected with CDKL5
mutations, and will also describe current research examining
the role o CDKL5 in these disorders. Target Audience: amilies
o children with a known CDKL5 diagnosis; amilies o children
with clinical Rett Syndrome who do not have a MeCP2mutation, or who have prevalent seizures; all others interested
in learning more about CDKL5 and current research.
Sunday afternoon
Cmmuicati At All Ages Susan Norwell, MA, Spec. Ed.,will motivate and encourage parents, teachers, therapists,
caregivers, and amily members with videos and stories o
girls/women using their brains to communicate in ways that
reveal their ideas, opinions and wonderul sense o humor.
Susan is thrilled the science has caught up with the reality she
has been a part o the last 25 years! As you view the videos
you will see ABILITY not disability shine through and be able
to see a path that includes true communication or those
struggling with Rett. Her hope is that it will inspire all
stakeholders to bring their best to the table or the girls they
serve and to assume the competence they so richly deserve!
Saturday morning
Cductive Educati is a comprehensive, educationalapproach or children with motor challenges ocused on
active participation. Conductive Upbringing o a child with
special needs, expectations and consistency. The role o
Rhythmical Intention in motor planning regarding apraxia,
dyspraxia. How can a child be taught throughout the day?
Recognizing small, but important details that will have huge
impact on development. Goal-directed activities. Integrated
program at home. Emphasis on parent education. Is it just
repetition orpurposefullychanging places and positions? Accessible environmentand equipmentto acilitate learning in
dierent settings. Ongoing observation to maximize potential
learning in order to ensure progress. Experiences are based on
working with girls with Rett Syndrome between
2 - 8 years o age. Sunday morning
Creatig a VisiThis is a participatory workshop duringwhich parents are guided to transorm their hopes and
dreams into a written vision or their childs uture. Handouts
assist participants in breaking down their visions into skill
categories. The group will engage in discussion about how
these skills can be integrated into their childs IEP
development. Sunday afternoon
Curret State Traslatial Research Trials Dr. AntonyHorton, Dr. Jerey Neul and Dr. Omar Kwjaja will together give
a State o the Science address, outlining strategic directions
and current progress in Rett Syndrome research which is
leading to the development and testing o new treatments,
and clinical trials. Saturday morning
Dads Pael In this session, you will hear a select panel oDads talk about their sometimes unique perspective on
coping with the diagnosis and beyond, balancing work-lie,
acing adolescence/adulthood with their daughters, and the
demands o being a special ather. Sunday afternoon
Emerget Literacy ad Cmmuicati We need to rmlyplant our eet within a literacy ramework that supports
literacy learning not only due to No Child Let Behind but
due to its research- based correlation with communication
development. This session will ocus on girls/women who are
at the beginning o the literacy continuum. We will lay the
groundwork or the rst-step work that ensures engagement,
communication learning and literacy development. We
will look at the rst block in the Building Block Model by
Patricia Cunningham. Come and learn, laugh and see videos
o girls engaged in real literacy activities. No worksheets or
identiying colors will be allowed!!! Sunday morning
Edcrilgy: Be Issues ad their Treatmet i
Rett Sydrme Decrease in bone mass has been reported inRett syndrome. Fracture rate is increased in Rett Syndrome
patients. This issue is part o a larger topic that relates various
neurologic actors to bone cell unction. This talk will review
these issues, discuss the diagnosis o bone deciency in Rett,
and will discuss the indications or, and methods o treatment.
Saturday afternoon
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Eteder RTT y otrs Trastrs MECP2 Esta sesin esespecialmente ideal para los recin diagnosticados, el recin
llegado o para repasar los conceptos bsicos del sndrome
de Rett. Vamos a cubrir en alto nivel: un poco de historia, las
tasas de incidencia, los criterios de consenso para hacer el
diagnstico clnico de clsico o atpica el sndrome de Rett,
las hembras y los machos, la longevidad, la gentica y el gen
MECP2, adems de problemas mdicos comunes. El doctor
Percy presentar en Ingls, y IRSF bilinge Representante y el
sndrome de Rett padre Maggie Wurm se traducir al Espaol
el domingo por la maana. Sunday morning 90 minutes
Expressi ad Mvemet Thrugh Dace In this session, avisiting proessor and choreographer rom Brazil will share
through lecture, video and possibly a perormance with
Isabela (RTT), his 4-year experience in working with his rst
student with Rett syndrome. Based on experiences with
autistic children, Down syndrome, and cerebral palsy, he will
highlight his emphasis on capabilities by means o passive
movement, where Isabela receives input and responds
through stiness or muscle relaxation as the movementitsel asks. He respects her eatures o the syndrome such
as scoliosis, gastrostomy, stereotyping and others, seeking
an artistic touch to the basic movements turning them
into choreography. Isabela responds positively, showing
through her eyes and smile that she understands and enjoys
the program. He works with several choreographies where
mental and motor abilities are challenged. Isabela has also
begun participating Peama, an initiative o the Department
o Education and Sports o Jundiai, Brazil, whose goal is to
include people with disabilities through the practice o motor
activities, sports and recreation. Sunday morning
Fsterig Friedships Toddlers To Teens This session willprovide ideas to assist parents in ostering riendships or
their girls with Rett syndrome. Strategies or adapting games,
crats and activities to engage the girls with their typically
developing peers in age appropriate games and activities
will be provided. This session also explores the commitment
and time that it takes to assist girls with Rett Syndrome in
obtaining and maintaining lielong relationships.
Sunday afternoon
Fudraisig Hw-T Wrkshp Learn the important basicso successul undraising in this one hour session. Leave
eeling knowledgeable and energized to begin your own
event to raise the much needed unds to support IRSFsmission to und research, support amilies and increase
advocacy and awareness. This session will help you to narrow
down the type o event you may choose to hold, explain
how to get started and provide strategies to ensure success.
Browse the many sample invitations, t imelines, literature,
olders and more that IRSF has to oer and leave with the
condence and knowledge o the resources that are available
to you to ensure successul undraising. Sunday morning
Gastreterlgy An overview o common GI issues towatch or in Rett syndrome, rom swallowing to GERD and
constipation, along with recommended treatments and
interventions. Saturday afternoon
Hw t Search out ad Critically Read Research ArticlesNavigating the internet in search or accurate inormation
about clinical research can be a challenge. Even though there
is a wealth o inormation available, there is very little guidance
when it comes to interpreting its meaning and how it may relate
to your child. Join us as we describe three broad categories
o Rett Syndrome research: basic, clinical, and translational. In
this discussion we will teach amilies where to search or and
how to critically interpret research articles. Together, we will
review exemplary papers and explain what makes them so
signicant and how they have contributed to a more complete
understanding o Rett syndrome. Sunday afternoon
IEP Pael Discussi:Your Real-Life IEPs Join us as apanel o proessional experts (a physician, communication
specialists, OT, PT, MT and parent advocates) review aselection o real-lie IEP goals rom students with Rett
Syndrome rom across America, rom the early school years
to middle and high school years. Whether ambulatory or
non-ambulatory, a healthy child or medically ragile, in a
special-day class or ull-inclusion or somewhere in between,
there is a template or an enriched learning environment that
can equal success or all o our students o varying needs and
abilities. Sunday afternoon 90 minutes
I Cmm: Music (Therapy)This presentation will addressthe commonalities among girls who have Rett Syndrome
and their signicant relationship with music. It provides a
oundation o all you want to know about music therapyand sets orth a solid rationale or Music Therapy (MT) being
included/unded as a standard best practice treatment or
Rett syndrome. Photos, anecdotes, and examples o many
MT methods will bring the process to lie. Sample goals
and objectives rom actual Individual Educational Plans
(IEPs) illustrate customization o MT or school age students;
post-IEP MT service will also be represented. In Common:
Music (Therapy) is appropriate or a general audience.
Sunday morning
Makig Eye Gaze Techlgy a Reality: The Road from Trialsto Conversations Getting support to und an eye gaze system
or girls or young women with Rett Syndrome (RTT) continuesto represent an ongoing challenge given decisions are made
based on the outcome o an eye gaze trial with a specic
device. Once a girl or woman receives her eye gaze system, it
is oten difcult to know where to start. This session will cover
eye gaze technology rom how to conduct successul eye
gaze trials through to building various types o vocabulary
pages that support a girl or young woman with RTT in using
her eye gaze system in conversations with communication
partners at home, school, and in the community. A range
o communication-based pages that support natural and
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spontaneous interactions across various eye gaze systems will
be highlighted. In addition, specic set-ups, congurations,
and videos o girls real lie experiences while using eye gaze
systems will be shared. Recommendations or supporting a
girls access to and exploration o a communication devices
preprogrammed language-based system to enhance her
conversations using novel expressions will also be shared.
Strategies or training communication partners to engage agirl or woman in conversations using her device, while also
acknowledging her other means o communication, will be
discussed. In addition, various ways to use an eye gaze system
as an integral part o literacy instruction will be highlighted.
Audience: Preschool, Elementary School, Middle School, High
School and Adult. Sunday morning90 minutes
Mid Tech Cmmuicati Usage ad Literacy AssessmetsThis session builds on the 8am Emergent Literacyand
Communication session to demonstrate how to move girls/
women rom oundational work o The Building Block Model
into the Four Block Model that delineates learning to read
in the more traditional sense. Making word activities will bedemonstrated to support learning the important reading
skill o decoding. Guided reading and writing options will
be demonstrated. Judy will share her important work with
assessing girls/women to nd their reading level. She will
also share videos to show how girls/women, rom a range
o communication abilities, can successully use various
iPad apps or communication. Come and see videos o girls/
women reading and leave inspired to include reading as
an important and reachable goal or your loved one and/or
student. Just a reminder: still no worksheets or identiying
colors will be allowed! Sunday morning
neurlgy:Seizures and EpilepsyDr. Bergin will discuss theclinical characteristics o seizures and epilepsy. She will discuss
the recognition o seizures and non-epileptic events in Rett
syndrome, their diagnosis and dierentiation, including the role
o investigations and their interpretation. She will also discuss
treatment o seizures and epilepsy, including the goals o
treatment, limitations and complications o treatment, as well
as reviewing the range o both traditional and non-traditional
treatments available. Saturday afternoon
nutritial Maagemet Childre with Rett Sydrmewill include discussion o nutritional concerns such as growth,
eeding problems, hydration, nutritional deciencies and
nutritional interventions such as g-tubes, seizure diets,supplements and high calorie diets. Questions and Answer
time will be provided. Audience: Parents and caregivers o
children with Rett Syndrome. Sunday afternoon
Parets Experieces with Geetic Testig r Rett Sydrme- Christine Delaney will present the results o her Masters
thesis research study in which she surveyed parents o
children with Rett Syndrome about their experiences with
genetic testing. The purpose o this study was to assess the
impact that the introduction o genetic testing or RTT has
had on the parents and to understand what actors motivated
parents to obtain or not obtain genetic testing.
Saturday morning
Physical TherapyThe session will cover the importanceo Physical Therapy and incorporating healthy movement,
postures and positioning into the liestyles o those diagnosed
with Rett Syndrome. Sunday morning
Researcher Pael Q&A Our speakers rom the morningResearch sessions will stay to answer your questions as a
panel discussion in a less ormal program ormat.
Sunday morning
Siblig PaelThrough an interactive panel discussion,parents will have a chance to hear what questions, needs,
and concerns are oten raised by brothers and sisters, young
and older, who have a sister with Rett syndrome. Parents
will come away with practical answers to commonly raised
questions. Saturday afternoon
Simple Slutis r Daily Prblems Our girls are anything butsimple but that does not mean that meeting their needs or
understanding their wants has to be difcult. Class activities
and materials used to spark communication will be shared.
This session will also take you through basic wants and
needs to demonstrate techniques or teaching children how
to let you know that they are in pain and where the pain is.
This session will have book adaptations on hand to explore,
and the presenter will have stories that her student with
Rett Syndrome wrote on display. She will also share how her
student has begun creating her stories on an iPad, which is
more accessible and easier to travel with. All o these topics
are useul or parents, caregivers, teachers, therapists, and
medical sta. The world seems to be catching up with our
children and we must help them along. Sunday morning
Special needs Wills ad Trusts In this session, we will coverin an uncomplicated manner recommendations on how to
prepare nancially, and how to have your amilys wills and
trusts set up, so as not to disqualiy your loved one or benets
in the uture. Sunday morning
Strllath: The IRSF Signature Fundraiser This roundtablediscussion is perect or anyone that has held a Strollathon or
thinks they may want to. Attendees will have a chance in this
small group setting to ask questions about where to begin
or a rst-time event, how to grow an existing Strollathon, or
just listen and learn rom a ew experienced Strollathon event
chairs. Sunday afternoon
T Sleep, Perchace t Dream:Sleep Disorders in RettSyndrome We will discuss the average amount o sleep
requirements or Non-Rett individuals o various ages, the
multiple reasons or nocturnal sleep disruption associated
with Rett syndrome, a check list o pathological problems
that should be considered, and nally a behavior modication
program or those girls who just want to get up at 2:00 AM
and have the whole household join her party.
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The Imprtace Therapies ad Rehabilitative MedicieThe importance o therapies in Rett Syndrome cannot
be overstated. Although RTT is not degenerative, it is
progressive. A consistent, inormed therapeutic program
overseen by a multidisciplinary therapy team in the clinic,
at school, and at home can maintain and in cases improve
skills. In this presentation, we will discuss the optimization o
unction through the combined use o medications, physical
modalities, physical training with therapeutic exercise,
movement & activities modication, adaptive equipment,
assistive devices, and orthoses (braces). Saturday afternoon
The Maturig Wma with Rett Sydrme:From Puberty toMenopause This presentation is a discussion o issues that
girls with Rett Syndrome and their amilies ace as they
mature into womanhood. Particular topics will include
the normal stages o puberty, menarche, and menopause,
seizures and antiepileptic medication issues that may arise
with puberty and throughout maturity, medications and
procedures or menstrual management, health maintenance
recommendations or special needs women, behavioral andsocial issues in women with Rett syndrome. Sunday morning
The Trasiti t Adulthd ad Cmmuity PrgramsTransitioning to adulthood means many things: living and
work options, recreation and social events, guardianship, and
Social Security, Supplemental Security Income, Medicaid,
Section 8, and other government benet programs.
Planning or a meaningul lie in the community takes time,
relationships and research. Learn what is available, what
questions to ask and how to access the resources currently
available to plan or lie in school, ater school, and adult
community options or women with Rett syndrome. This
session is appropriate or caregivers o older teenagers andbeyond. Participants will learn how to enable people to make
inormed choices regarding their particular needs, and the
services that might be helpul to them. Sunday afternoon
Uderstadig RTT ad other MECP2 Disrders This session isparticularly ideal or the newly diagnosed, the newcomer or
to brush up on the basics o Rett syndrome. We will cover in
high level: a bit o history; incidence rates; consensus criteria
or making the clinical diagnosis o classic or atypical Rett
syndrome; emales and males; longevity; genetics and MECP2;
plus common medical issues. Saturday morning
Ways t Make it G Right A Look at IGF-1 and other SmallMolecules Plasticity, or the adaptive response o the brain
to changes in inputs, is essential to brain development and
unction. The developing brain requires a genetic blueprint
but is also acutely sensitive to the environment. The adult
brain constantly adapts to changes in stimuli, and this
plasticity is maniest not only as learning and memory but
also as dynamic changes in inormation transmission and
processing. The goal o the Sur laboratory is to understand
long-term plasticity and short-term dynamics in networks
o the developing and adult cortex, aiming to use insights
rom brain development to understand mechanisms o
developmental brain disorders such as Rett syndrome.
Sunday afternoon
Well Child ad Adult Care overview During this session,general health maintenance recommendations will be
discussed, including immunizations and periodic well
visits or the child and adult with Rett syndrome.
Saturday Afternoon
What Is DnA? Extract It Yursel In this simple, eective wetlab, IRSFs Dr. Tony Horton will walk participants through an
experiment while discussing the importance o DNA and
MECP2 in human development. LIMITED TO 25 PARTICIPANTS,
on a rst to arrive basis. Sunday morning
What Is Gig Right I Her Brai In this talk Dr. Djukic willillustrate the belie with which she runs the Rett Syndrome
Center at Monteore: that a child with Rett Syndrome will be
best served i approached not only as a patient but as a whole
child. Like any other individual, those with Rett Syndromebesides weaknesses have strengths and these strengths can
be utilized in order to overcome weaknesses. Treatment o
any individual symptom (seizures, irritability, apraxia) is
only a part o the broader picture. Dr. Djukic will review these
positive aspects rom dierent standpoints including cellular/
microscopic, imaging/MRI, therapies (PT, OT), psychological/
educational planning, and illustrate how they should be
incorporated into the guidance that the physician provides to
each amily or treatment, education and research planning.
Saturday morning
What Happes i Rett Sydrme at a Mlecular Level:
Epigenetics and Assay DevelopmentThis talk will provide ascientic overview o epigenetics or the non-scientist. We
will look at what genes are; how they are regulated to allow
brain cells (neurons) to unction; and the normal unction o
MECP2 (the gene mutated in Rett syndrome) in this regulatory
process. The talk will explain what epigenetics is as it pertains
to Rett Syndrome and what the MeCP2 protein does that is
so important. We will also look at modeling Rett Syndrome in
human cells and mouse models or developing treatments.
Sunday morning
What Happes i Rett Sydrme at a Systems LevelNeurobiology of RTTThis talk will provide a scientic
overview o system level analysis o brain unction or thenon-scientist. We will look at what brain cells (neurons)
are; how they acquire adult unction in response to the
surrounding environment and how MECP2 (the gene mutated
in Rett syndrome) may aect their capability to properly
incorporate and process the external world. The talk will
discuss new strategies to recover neuronal unction in
mouse models o Rett syndrome. Sunday morning
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Stephe E. Bajardi,Executive Director othe International Rett Syndrome Foundation(IRSF), has a strong background in thevoluntary health nonprot sector, especially inundraising, public policy and management.He has worked at the executive level orthe National Kidney Foundation, NationalHemophilia Foundation, HuntingtonsDisease Society o America, the GreaterNew York March o Dimes and the JuvenileDiabetes Foundation. Steve is currently aBoard Member and Treasurer o the NationalOrganization or Rare Disorders (NORD).
Kate Bares, BSc, Clinical ResearchCoordinator Rett Syndrome Program,Department o Neurology, ChildrensHospital Boston, earned her Bachelor s oScience in Public Health rom ProvidenceCollege in Providence, Rhode Island. Ms.Barnes has held her position as ClinicalResearch Coordinator or the past ve
years. She is currently managing the clinicaltrial investigating the Treatment o RettSyndrome with IGF-1 and is the coordinatoror the Boston site o the Rett SyndromeNatural History Study. Ms. Barnes enjoysworking closely with the Rett SyndromeAssociation o Massachusetts (RSAM) inpromoting Rett Syndrome research andamily education.
Judy o. Barrish, BSn, Rn, is the PatientCare Manager and Project Coordinatoror the Blue Bird Circle Rett Center inthe Department o Pediatrics, Section oNeurology at Baylor College o Medicine in
Houston, TX and has worked in this positionor the past eight years. She also serves asa Proessional Advisor to IRSF. She receivedher Bachelor o Science degree in Nursingat Texas Womens University in Denton, andis a Board Member or the Association oClinical Research Nurses in Houston. Mrs.Barrish began her nursing career in 1976,specializing in intermediate and intensivecare or inants, and later, urthered herexperience as manager o the PediatricNutrition & GI Procedures Suitea positionwhich she held or 12 years. During hertime with the GI/Nutrition Department,she had the opportunity to work with Dr.Kathleen Motil, who is the specialist in GI/Nutrition or the Blue Bird Circle Rett Centerin Houston. Mrs. Barrish brings with herurther educational knowledge rom workingwith the departments o Surgery and AdultClinical Care.
A M. Bergi MB, ScM is AssistantProessor in Child Neurology at ChildrensHospital Boston, an epileptologist in theComprehensive Epilepsy Clinic at Childrensand Director o the Ketogenic Diet Program.She completed her medical training at theNational University o Ireland at University
College Dublin. Pediatric training wascompleted in Ireland and Child Neurologyresidency, as well as Epilepsy and ClinicalInvestigation Fellowships were completed atJohns Hopkins University. She is a diplomateo the American Boards o Psychiatryand Neurology, Clinical Neurophysiologyand Pediatrics. She works with Dr Khwaja
in providing comprehensive epilepsyconsultation and care or patients attendingthe Rett Syndrome Clinic at ChildrensHospital Boston.
Da Chadwick, MT-BC, MS, LMHC,is a board certied music therapist andlicensed counselor, Donna earned a Mastersdegree in speech and language pathology.She spent her 35 year career in Massachusettsand Southern New Hampshire, holdingpositions at Hogan Regional Center, severalspecial education collaboratives, and retiredlast month ater 18 years at CrotchedMountain Rehabilitation Center. Donna hasdirected both clinical and academic programs,appeared in documentary lms, publishedand presented widely.
Concurrent with other employment, Donnahas conducted a private practice since1978. In an evidence-based model o musictherapy, she uses live improvised musicand captivating instruments or optimalmotivation, achievement, and mutual joy.Girls who have Rett Syndrome have beenserved in her practice or over twenty yearsand Donna has spoken o their unique MusicTherapy process at several conerences.In The Creative Arts Therapies chapter in
Developmental/Behavioral Pediatrics, 3rdEdition (Levine, Carey, Crocker, Eds. 1999),she wrote o the importance o MusicTherapy to girls who have Rett syndrome.
A passionate lielong clinician, Donna is alsoan Associate Proessor on the Music Therapyaculty at Berklee College o Music, Boston.
Christie Delaey, MS, recently graduatedrom Brandeis University with a Masters degreein Genetic Counseling and she has a Bachelorsdegree in Biology rom Providence College. Asa genetic counselor, Christine is trained tounderstand and translate inormation
regarding various genetic syndromes topatients and amilies and to provide supportand resources to these amilies. For her thesis,she decided to study genetic testing or RettSyndrome because she has a amily riend withthis condition. For the past year, Christine hasbeen interning in genetics clinics throughoutMassachusetts and working on the IGF-1Clinical Trial at Childrens Hospital Boston as anAdministrative Assistant. She will soon berelocating to Atlanta to start work as a cancergenetic counselor.
Barbara DeLuca, MEd, MSPT,ATP, isa Registered Physical Therapist with over30 years o experience working in both thetherapeutic and education systems. Shereceived her Masters Degree in Education,with ocus on Corrective and AdaptiveTherapy, rom Boston University, and herMaster o Science Degree in Physical Therapy,rom Simmons College. Barbara spent therst hal o her career developing programs,working and teaching in orthopedics,cardiology, neurology and pediatrics inFort Knox, Kentucky, El Paso, Texas andBrunswick, Maine.
Returning to the Boston area over 20 yearsago, her ocus has been working withstudents with special needs within theschool system and in their homes. In additionto attending clinics and volunteering atvarious IRSF und-raisers or the past 10years, she has had the privilege to work with,and learn rom many girls and young women
with Rett syndrome, and their amilies, in theUnited States and in Haiti. As a proessionalwith experience working with the RettSyndrome population, she was eatured in anarticle in Physical Therapy Today.
Barbara has worked at Cottting School,in Lexington, Massachusetts, since 2006.Cotting opened in 1893 as the rst non-protday school or children with disabilities.She continues with private home physicaltherapy services, as well.
Aleksadra Djukic, MD, PhD, Director, RettSyndrome Center, Albert Einstein College
o Medicine at Monteore completed herneurology residency at the Albert EinsteinCollege o Medicine. She is a diplomat o theAmerican Board o Psychiatry and Neurology.Dr. Djukic has a Ph.D. in neuropsychologyand is especially qualied or evaluationsand treatment o children with learningdisabilities, addressing both cognitive andneurological problems in children with avariety o hereditary neurological diseasesand babies with neonatal neurologicalproblems.
Dr. Djukic is a member o the InternationalConsortium or Rett Syndrome RettSearch,
leader o the working group or developmento Treatment Guidelines or Rett Syndrome,grant reviewer or IRSF, member o theInternational Committee or the researcho bio markers in Rett Syndrome andmember o the International Committee orthe research o outcome measures in Rettsyndrome. Dr. Djukic is member o RE-TT(Rett Education -Transorming Teaching)a group which is actively addressingeducational issues and provides supportto amilies.
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Jeier Edres, Family ResourceManager, IRSF, serves as a source oemotional support or parents and caregiverso those individuals diagnosed with RettSyndrome and also provides inormationand resources to the broader Rett Syndromecommunity. She not only assists amiliesthrough hardships and tough times, shehas also inspired and sparked the interest onumerous amilies and individuals across thecountry to set out on their own undraisingendeavors. She and her husband successullychair their own Strollathon each spring.Jennier has numerous helpul tips andhelpul hints to share with anyone interestedin planning an eventensuring ease andsuccess. Jennier and Justin are the proudparents o 8 year old, Jillian, diagnosed withRett syndrome.
Michela Fagilii, PhD, researcher at theF.M. Kirby Neurobiology Center, Childrens
Hospital and Harvard Medical School ocuseson how neuronal cortical circuits are sculptedby sensory experience in early postnatallie. Dr. Fagiolini has shown that intracorticalinhibition by a specic circuit connectiondirectly controlling the timing, duration andclosure o a classical brain plasticity is thedriving orce or plasticity in vivo. She is nowinvestigating the role o excitatory/inhibitorybalance in cortical circuit renement inAutism Spectrum Disorders with particularocus on Rett syndrome. The results willprovide new potential therapeutic strategiesor reactivating brain plasticity in patients.
Carlihs Faustii, is a teacher andchoreographer in the area o classicaland contemporary dance. He has workedor nearly 16 years in dance or peoplewith disabilities, in addition to acting as ateacher (ballet and contemporary) o thePostgraduate Course in Dance at the Schoolo Physical Education in Jundiai - So Paulo -Brazil. About 4 years ago he started workingwith Isabela, his rst student withRett Syndrome.
David Gerge Frame, PharmD, is AssistantProessor and the Clinical Hematology/Oncology/Bone Marrow Transplant Specialist
at the University o Michigan in Ann Arbor,Michigan. Most importantly he is the athero Kiera, a precious 5 year old girl with aCDKL5 mutation/Atypical Rett syndrome.Dr. Frame is utilizing his specialty trainingin biochemistry and pharmacology as amember o the scientic advisory boardor the International Foundation or CDKL5Research (IFCR), and is helping to guideresearch directions. Dr. Frame is also involvedin urther dening CDKL5 and its link withRett syndrome, as well as advancing ourunderstanding o therapeutic rational and
possible therapeutic interventions. He isalso an advisor to the International RettSyndrome Foundation. While his specialtyis in the eld o oncology he is also utilizingepigenetic strategies to employ changes inRett syndrome. His lie goal is to better theuture or our children.
Dald Freedma, an attorney inpractice or 38 years, is a ounding partnero Rosenberg, Freedman & Goldstein LLP,o Newton, where he concentrates onprotecting the interests o children andadults with special needs. Don currentlyserves as Board Chair o the Learning PrepSchool, a special education day school. Heis also on the Executive Advisory Council oThe Arc o Massachusetts and on the Boardo Advocates o Jewish Family & ChildrensServices. Among other past positions, hehas been Board Chair o the MassachusettsChapter o the Alzheimers Association andhas served on the Governors Commissionon Mental Retardation, the MassachusettsDevelopmental Disabilities Council andthe Board o Directors o Jewish VocationalServices, where he chaired the DisabilityServices Committee. He is co-editor o thetreatise, Estate Planning for the Aging orIncapacitated Client in Massachusetts.
Jei Grammer, Special Events ProgramManager, IRSF, serves as the go-to personor amilies and individuals who want tohost undraising events or IRSF and lendsher undraising know-how to event chairs.She serves as a virtual committee memberor various Strollathons across the countryas well as chairs the Cincinnati Strollathon.During event season Jenni is on the roadparticipating in a variety o events providingday-o support and assistance with behindthe scenes details. Jenni works in the IRSFCincinnati, OH ofce which is also herhometown. She has a background in unddevelopment and marketing and is willingand able to help make any event un, easyand successul.
Igrid A. Hlm, MD,MPH is director othe Phenotyping Core o the Program inGenomics at Childrens Hospital Boston
and an Assistant Proessor o Pediatrics atHarvard Medical School. She received herMD rom the University o Caliornia, LosAngeles. She completed an internship andresidency in pediatrics, and post-graduateellowships in genetics and pediatricendocrinology, at Childrens Hospital Boston.In 2003, she completed the Harvard PediatricHealth Services Research Fellowship, andreceived her MPH in Clinical Eectiveness atthe Harvard School o Public Health. She isa member o the Institutional Review Board(IRB) at Childrens, where she helps review
protocols or genetics studies with humansubjects, and also chairs the ExecutiveBiorepository Committee at ChildrensHospital Boston. She has been elected to theSociety or Pediatric Research, and as Fellowin the American College o Medical Genetics.Holm continues her clinic practice in geneticsand endocrinology ocusing on genetic
disorders o bone in children.
We are especially honored to have Dr. IngridHolm at our conerence in honor o hermother, Dr. Vanja Holm, MD, DevelopmentalPediatrician at the University o Washingtonin Seattle, now 82 and retired, who was oneo the rst physicians in the U.S. to deneRett syndrome.
Aty Hrt, PhD, Chie ScienticOfcer o IRSF, gained his Doctoral degreeat St. Andrews University in ScotlandU.K., where he was trained in the areas oneuroanatomy, developmental neurobiology
and neuronal cell survival. Following this,he conducted our years o post-doctoralresearch on neurodegenerative diseasesat the Rockeeller University in New York.Dr. Horton has published on aspects oneurodegeneration and neuronal cellsurvival in a number o research papersand journal ar ticles. Prior to joining IRSF,Dr. Horton gained valuable experience inresearch management spending ve years atthe Juvenile Diabetes Research Foundationwhere as a Program Director, he led a smallteam that helped set the translationalresearch agenda on Diabetic Complications.In addition, Dr. Horton spent two years at
the Alzheimers Drug Discovery Foundationwhere he worked in a Venture Philanthropysetting on the development o drugs orAlzheimers disease and related dementias.
Dick Hyt Together You Can DoAnything!Rick Hoyt uses a wheelchair, but that hasnot stopped him rom living a very ulland amazing lie. Hes competed in theBoston Marathon 29 times and in IronmanTriathlons six times. He, along with his dadDick, has ormed Team Hoyt and theyhave competed around the world doingmarathons and triathlons. The Hoyts havecompeted in over 1000 athletic events in the
last 30 years. Dick, 70, is a retired Lt. Colonel,having served in the military or 35 years.Rick, 49, is a graduate o Boston Universitywith a degree in Special Education. Rick wasborn in 1962 as a spastic quadriplegic withcerebral palsy and as a non-speaking person but despite these disabilities, Ricks mindand spirit have always been strong. His amilysupported his quest or independence andinclusion in community, sports, educationand the workplace, culminating with hisgraduation rom Boston University.
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Dick travels the country doing corporateand community presentations, educatingthe public about disability awareness andpromoting the Team Hoyt motto, Yes YouCan. Through his presentation, Dick shareshis lielong commitment to changingattitudes and educating others on the worldo disabilities. He and his amily have seen an
impact rom their eorts in the area o publicattitude toward people with disabilities. Youmay visit their website at www.teamhoyt.com to learn more about their story and seemany pictures o their journey through their30 years o racing.
Mary Jes, MD, is a pediatrician andpartner in East Bay Pediatrics, Berkeley, CA.She has served as Pediatric DepartmentChairman at Alta Bates Hospital in Berkeley,CA, and currently serves on the AlamedaCounty Childrens Advisory Council. Beoregoing to medical school she worked as apublic health nurse in NOLA. She receivedan MPH in Maternal Child Health rom theTulane School o Public Health and TropicalMedicine. Six years ago one tiny patient withRett Syndrome and her parents touched thehearts o Dr. Jones and her amily. She joinedwith other clinicians to ound Katies Clinicor Rett Syndrome at Childrens HospitalOakland. The multidisciplinary clinic nowserves patients rom the western regiono the U.S. By working with experts in theeld and by partnering with physicians,educators, therapists, and amilies it is Dr.Jones goal to provide comprehensive careor patients with Rett syndrome.
omar Khwaja, MD PhD. is a childneurologist and Director o the RettSyndrome Program at Childrens HospitalBoston and Harvard Medical School.He graduated rom the University oCambridge in the United Kingdom andhas a PhD in Human Molecular Genetics.Beore moving to Boston, he worked at theRoyal London Hospital and Great OrmondStreet Hospital or Children in Londonand the Murdoch Childrens ResearchInstitute and Royal Childrens Hospital inMelbourne. He established the Boston RettSyndrome Program in 2007 and overseesthe care o over 300 children and adults
with Rett Syndrome as well as MECP2and CDKL5 related conditions. He is thePrincipal Investigator or the clinical trialo mecasermin (IGF1) or Rett Syndromeand a co-investigator in a number o otherRett-related studies. He is a Member o theRoyal College o Physicians and the RoyalCollege o Paediatrics and Child Health. DrKhwaja specializes in neurogenetic disorders,pediatric critical care neurology and etal andneonatal brain disorders.
Kathry Schae Kissam, Chairman, IRSFBoard o Directors, is a branding, publicaairs and issues management consultant.Her clients include Fortune 500 companies,agencies, and law rms throughout theUnited States. Prior to orming her ownconsulting business, Kathryn was the ChieMarketing Ofcer and Founder o Evolve24,a technology-based issues managementcompany. Kathryn also worked or MonsantoCompany o St. Louis Missouri or 13 years invarious leadership capacities and served on theboards o the Monsanto Fund, The PharmaciaFoundation and The Missouri HistoricalSociety. She is a graduate o Leadership MetroRichmond and a requent speaker at brandingand corporate citizenship conerences. Herconnection to Rett Syndrome began throughher sister, RTT clinician and researcher, Dr.Carolyn Schanen, o DuPont Childrens Hospitaland continues to grow through the meaningulrelationships she has built with amilies, donors,board and sta.
Jae Lae, BSn, Rn has more thaneighteen years experience with RettSyndrome as a research coordinator andmanager in child neurology and theCivitan International Research Center at theUniversity o Alabama at Birmingham. Sheworks alongside Alan Percy, MD in their RettSyndrome Clinic and as the Project Manageror the Angelman, Rett, and Prader-Willisyndromes consortium o the Rare DiseaseClinical Research Network. The Natural Historystudy o Rett Syndrome and MECP2 mutationsalone has enrolled over 900 emales andmales with the disorder. She has co-authored
over 25 publications, many pertaining to RettSyndrome.
Jane serves as a member o the RettSearchStudy Group, an international collaborationrelated to the organization o clinical trialsor Rett Syndrome and is the Family SupportProject Manager to the InternationalRett Syndrome Foundation, serving as aresource o issues regarding medical care oramilies o children with Rett Syndrome andmutations in MECP2. She is a proessionaladvisor to the Southeastern Rett SyndromeAlliance Board. She has spoken numeroustimes on the topic o medical issues in Rett
Syndrome and on issues related to thematuring woman with Rett syndrome.
Judy Lariviere, M.Ed., oTR/L, is anAssistive Technology Specialist and aPediatric Occupational Therapist who hasworked in the eld o Assistive Technology,including Augmentative and AlternativeCommunication (AAC), or the past 23 years.Judy is also the Communication Specialist atKaties Clinic or Rett Syndrome at ChildrensHospital & Research Center Oakland. Overthe past ten years, Judy has worked with
many girls with Rett Syndrome (RTT);identiying their best means o access totechnology or communication and learning,while also implementing tools and strategiesto support their educational progress,particularly in the area o literacy. Judy hasconducted over 100 successul eye gazetrials with girls and young women with RTT
using her custom designed page set that shedeveloped specically or girls and womenwith Rett syndrome. She has presented atseveral international technology conerencesabout the work she is doing with girls withRTT. Judy is personally committed to helpinggirls with Rett Syndrome express theirown thoughts and eelings, develop socialcloseness, and learn to read and write.
Mickie McCl, parent advocate, creditsher daughter Ellie as the driving orce behindher creativity, resourceulness, energy andproblem-solving ability that has enabledMickie to strategize about Ellies home healthissues, drive or ull-inclusion in a regularschool program with modied curriculum,and raise unds and awareness or research.She also serves on the IRSF Family AdvisoryBoard (FAB), and is working with Dr PetraSwidler at Cardinal Glennons ChildrensHospital to open a Rett Syndrome clinic.Mickies true talent is her ability to work thesubject o Rett Syndrome into nearly everyconversation with charm and joy.
Kathlee J. Mtil, MD, PhD is an AssociateProessor o Pediatrics and research scientistat the USDA/ARS Childrens Nutrition ResearchCenter, Baylor College o Medicine, and servesas a pediatric gastroenterologist in the Sectiono Pediatric Gastroenterology and Nutrition,Texas Childrens Hospital, Houston, TX. Dr.Motil earned her MD degree at The MedicalCollege o Pennsylvania and her PhD innutritional biochemistry and metabolism atThe Massachusetts Institute o Technology. Shecompleted her pediatric residency at MontrealChildrens Hospital and her ellowship inpediatric gastroenterology and nutrition atBoston Childrens Hospital Medical Center. AtBaylor College o Medicine, Dr. Motils researchinterests ocus on growth and nutrition inchildren with rare genetic disorders, includingRett syndrome. She has conducted studies
on the dietary energy and protein needs, oralmotor and upper gastrointestinal dysunction,and the clinical outcomes o gastrostomyplacement in girls with Rett syndrome. Hercurrent projects examine the natural historyo osteopenia and the role o dietary calciumin reversing low bone mineral density in girlsand women with Rett syndrome. Dr. Motil hasserved on the Scientic Advisory Boards othe International Rett Syndrome Foundationand the National Foundation or EctodermalDysplasias. She has published more than 120articles in her eld.
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Jh W. nadwry, CFP is a nancialplanner and investment advisor who knowsinsurance inside and out. He has spent hiscareer specializing in special needs planning.His son has special needs, and he is veryactive in und-raising and in the publicpolicy arena in the eld. John has served onthe Massachusetts Governors Commissionon Mental Retardation. Also, John, with hispartner, Cynthia Haddad, whose brother hasspecial needs have co-authored a book onspecial needs estate planning. By experienceand inclination, he is knowledgeable andresponsive to the sensitive, personal as wellas strictly nancial issues that amilies ace.
Jerey L. neul, MD, PhD is AssistantProessor o the Department o Pediatrics,Section o Neurology and the AssistantMedical Director o The Blue Bird Circle RettCenter at Baylor College o Medicine inHouston, Texas. Dr. Neul received his MD and
PhD rom the University o Chicago, Illinois,and completed his residency and ellowshipprograms at Baylor College o Medicine. Hehas board certication in Neurology, withSpecial Competency in Child Neurology andis a member o the Child Neurology Society,the American Academy o Neurology, and theSocietyor Neuroscience.
Dr. Neul is active both in laboratory andclinical research working closely with Drs.Daniel Glaze and Huda Zoghbi in those areas.Dr. Neul is interested in translating knowledgeacquired rom basic science research intopotential therapies or Rett syndrome. Heis actively using animal models o Rett
Syndrome to elucidate the pathophysiologicalmechanisms o disease and to conductpreclinical trials o potential therapies.
Da L. nimec, MD has practicedpediatric physical medicine & rehabilitationin Boston or the last 16 years. Prior tobecoming a physician, she worked as aspecial education teacher or six years. Shecurrently specializes in the management ospasticity and dystonia. She works closelywith the Rett Syndrome Program team atBoston Childrens Hospital.
Susa nrwell, M.A. Spec. Ed., hasworked with a wide array o special needsstudents or the last 34 years. She hasspent the last 23 years in private practiceworking primarily with children on theAutistic Spectrum and girls who have Rettsyndrome. She is trained in GreenspansFloortime model and would considerhersel a relationship based educationalspecialist. She has ocused in the recentpast on augmentative communication, playand literacy or girls with Rett Syndromeand children on the spectrum especially
those without verbal language. She consultsto various school districts on successuleducation o children with signicant needsand has presented workshops throughoutthe U.S. and Canada dealing with play andliteracy or children with Autism and girlswith Rett syndrome.
Paige nues, Director o Family Support,IRSF, dedicates her time to providing a saetynet o accurate inormation, emotionalsupport, and connections or the amilies,caregivers, and support teams o childrenwith Rett Syndrome at all stages o their lives.Paige has served on the Board o Directors,as a Regional Representative, and is parentounder o Katies Clinic or Rett Syndromeat Oakland Childrens Hospital. She enjoyeda successul career in sales, marketing, andbusiness development with Fortune 500companies prior to her daughter Katiesdiagnosis o Rett Syndrome in 2003. She andher husband Jesse live in Caliornia, proudparents o three extraordinary girls.
Heather M. oLeary, BSc, BiomedicalEngineering Research Scientist, RettSyndrome Program, Department oNeurology, Childrens Hospital Boston,earned her degree in biomedicalengineering rom Boston University. Shehas over ten years experience in medicalresearch ocused on quantitative analysiso magnetic resonance images (MRI),electrocardiogram (ECG), blood pressure,respiration, electroencephalogram (EEG),and near inrared spectroscopy (NIRS).Her work includes real-time bioeedbackapplications to enhance sel-regulation ocortical stimulation, analysis o pre-termpostnatal autoregulatory developmentand antecedents to brain injury, andanalysis o autonomic dysunction in Rettsyndrome. She is currently engaged in theTreatment o Rett Syndrome with IGF-1clinical drug trial examining quantitativeautonomic biomarkers as well as developingnovel syndrome specic biomarkers thatcharacterize clinical severity.
Kare Patters has been teachingspecial education or 27 years and nds it
is a true privilege to teach and learn romthese children every day. She ocuses mosto her attention on literacy andcommunication. Although some o herstudents cannot read, they all benet romreading activities. For communication needs,she always work with what matters to thechild; i it isnt meaningul to them then theywill not respond, and she has never taughttwo children in the exact same way. Karen isalso a Board Member, EducationRepresentative, or the Coastal PlainsInteragency Coordinating Council; Bright
Beginnings: Birth 3 In Home Services.She consults or parents, caregivers, andteachers/therapists o Rett Syndromegirls, and has presented at the ollowingconerences: International Rett SyndromeConerence, Southeastern Rett SyndromeAlliance, Assistive Technology IndustryAssociation in Orlando and Chicago
2008, 2009, and 2010, and Gul CoastAugmentative Communication Conerences2009 and 2010. Karen operates a website,www.eyesplease.com which eatures eyegaze communication kits or nonverbalchildren and adults. She created most o thekits to address the needs o her students.The kits are designed or medical needs,critical inormation or caregivers and rstresponders, puberty, and daily choicemaking. Beginning in June o 2011, the sitewill eature literacy activities and ideas.
Ala Percy, MD is a pediatric neurologist atthe University o Alabama and internationallyknown researcher on Rett syndrome. He hasoccupied prominent leadership positions innumerous academic neurological societiesand is Past President o the Child NeurologySociety and the Child Neurology Foundation.Dr. Percy has served as Director o theAmerican Board o Psychiatry and Neurology,is a Fellow in both the American Academyo Pediatrics and American Academy oNeurology and is actively involved in manynational and international pediatric andneurology societies. Dr. Percy has beennamed one o America s Best Doctors onthe www.bestdoctors.com web site. Dr.Percy has served as Scientic Director or the
International Rett Syndrome Association andhas organized and led several internationalscientic meetings on Rett syndrome. Therst NIH unded Rett center was establishedunder Dr. Percy at Baylor College oMedicine in 1986. He currently serves asProessor o Child Neurology, AssociateDirector CIRC Director, UAB IDDRC PrincipalInvestigator, and PI o the Angelman, Rett,and Prader- Willi Syndrome Rare DiseaseClinical Research Consortium. In addition toauthoring more than 120 scientic papers onRett Syndrome and more than 300 in totalrelated to Child Neurology, Dr. Percy is aco-author oThe Rett Syndrome Handbook.
Elaie Rabbitt is a trainer or theFederation or Children with Special Needsin Massachusetts. For over our years shehas served as a parent mentor and supportspecialist in helping parents advocate or theirchildren in the special education process. Shehas authored several presentations or parentsand serves as a training consultant to PPAL(Parent & Proessional Advocacy League). Elaineis passionate about helping amilies o
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children with special needs learn to understandthe special education process, which starts withdeveloping a vision or their child.
Diae M. Rss, MS, LCPC has spent thelast twenty years developing adaptationsor games, crats and activities or her
daughter Lindsey and her typicallydeveloping peers. Diane has a MastersDegree in Education and is a LicensedClinical Proessional Counselor. Diane andher husband Mick live in Schaumburg, ILwith their our children including Lindsey,age 23, with Rett syndrome.
Mick Rss, MS has a Masters Degreein Education with over thirty years oteaching experience at the high school level.Mick and his wie Diane have served onnumerous educational committees locallyand throughout the state o Illinois. Theyhave presented at many state and national
conerences on a variety o educationaltopics. Mick and Diane have been activelyinvolved in their daughter Lindsey s inclusiveeducation. They live in Schaumburg, IL withtheir our children.
Gail Seche, MMSc, RD, CSP is a RegisteredDietitian who has specialized in pediatricssince 1989. She received her Masters Degreein Medical Science at Emory University inAtlanta. Gail spent the rst hal o her careerworking with children with special healthcare needs in the Pediatric SubspecialtyClinics at Caliornia Pacic Medical Centerin San Francisco. She then took a position
at Childrens Hospital and Research Centerin Oakland, Caliornia where she nowmanages the Clinical Nutrition Departmentand serves as the dietitian or Katies Clinicor Rett Syndrome. In addition to attendingmonthly clinics and volunteering or the RettSyndrome Natural History Research Study,in 2008, she co-authored a Nutrition Focuspublication or the University o Washingtontitled: Nutrition Management of Childrenwith Rett Syndrome: An Update.
Bria Sktk, M.D., M.P.P., a clinical ellowin genetics at Childrens Hospital Boston,Massachusetts General Hospital, Brigham &
Womens Hospital, and Dana Farber CancerInstitute, has dedicated his proessionalenergies toward children with cognitiveand development disabilities. In 2001 he co-authored the national award-winning book,Common Threads: Celebrating Life with DownSyndrome and, most recently, Fasten YourSeatbelt: A Crash Course on Down Syndromefor Brothers and Sisters. He is a graduate oDuke University, Harvard Medical School,and Harvard Kennedy School. Brian recentlyauthored major research on how physiciansdeliver a diagnosis o Down syndrome to new
and expectant parents. He has been eaturedin The Wall Street Journal, The New YorkTimes, The Washington Post, The L.A. Times,NPRs On Point, and ABCs Good MorningAmerica. Brian worked with Karen Ericksonand David Koppenhaver on Rett Syndromecommunications skills through storybookreading.
Mrigaka Sur, PhD, Newton Proessor oNeuroscience, Department Head o Brainand Cognitive Science at MassachusettsInstitute o Technology, is a distinguishedand widely published neuroscientist. Hisresearch interests include organization,development and plasticity o the cerebralcortex o the brain; experimental andtheoretical approaches to neuronal networksand processing; plasticity and learning indeveloping and adult sensory systems anddisorders o the brain.
Elera Tamase MA, QCS, QTS,ETgraduated with a Masters degree inelementary education with specializationin working with the motor disabled romthe International Peto Institute, Budapest,Hungary in 1992. As a conductor - teacher,she designed and delivered comprehensiverehabilitation programs based onConductive Education principals in Englandand Canada or children with neurologicallybased motor disorder and/or globaldevelopmental delay beore moving to SanJose, CA in 2006. Eleonora provided homeand center based Early Intervention servicesthrough the local regional center or childrenunder three. She completed her EducationalTherapist program at the University oCaliornia Santa Cruz and is currently in theprocess o obtaining her Level 1 certicationin Handwriting without Tears. Through herprivate practice, Learning Together, Eleonoraprovides a holistic, educational approach toamilies with children with motor challenges.She works with various school districts in thethe Bay Area regarding accommodationsor inclusion, transition planning andintegrating the motor component in theschedule to maximize active participationand provide opportunities or active learning.She also provides training or teachers, aidsand para-proessionals.
Ala White, Director o ResidentialAlternatives, TILL, Inc. has been working inthe Human Service eld or the last 30 years.He began his career in 1979, working as aSpecial Education teacher in the Bualo,NY public schools. Ater teaching or oneyear, he let the school system and movedto Houston, Texas, where he began workingwith adults with developmental disabilities.In 1984, he began working at TILL, Incas a Qualied Developmental Disability
Proessional as community residentialservices were being developed as peoplewere moved rom institutional settings.Over the last 26 years, he has worked closelywith amilies, individuals and public undingsources to develop individualized residentialsituations called Creative Living Options(CLO). This model provides amilies and
individuals a variety o service models toaddress individual needs as an alternative totransitional group living. The CLO programsare ever changing and the models havecontinued to expand and develop as moreamilies and caregivers work cooperatively.This model also addresses unding issuesand may combine several dierent undingsources in one residence. He continues to beexcited about the possibilities available toindividuals i we look at all avenuesand resources.
Maggie Deis-Wurm is a credentialedmedical Spanish interpreter andtranslator. She serves as an IRSF BilingualRepresentative and is also mother tobeautiul Madasyn with Rett syndrome.Maggie is a tireless undraiser and advocate,and she was the organizer and brainchildbehind the gathering at the Today Show onOctober 1st, 2010.
Christpher Wyder PhD is currently avisiting scientist at the Schulich School oMedicine, University o Western Ontario.He previously held the position o principalinvestigator in the McMaster Stem Celland Cancer Research Institute (SCC-RI).Christopher received his PhD in braindevelopmental genetics in 2002 romRockeeller U