a publication of the sturge-weber foundation … publication of the sturge-weber foundation...

Founded in Fall 1987 | Volume 30 Number 3 | August 2016

A publicAtioN oF tHE stuRgE-WEbER FouNDAtioN

Branching Out

P5 P8P4 InternatIonal scene

australIa–a trek to remember

research updates

2 Celebrating 29 Years of Compassionate and professional serviCe

the Sturge-Weber foundationMagazine

addressthe Sturge-Weber foundation

PO BOx 418 • Mt. FreedOM, NJ 07970973 895-4445

973 895-4846 (Fax)[email protected]

editoranne hoWard

graphic designallegra MarketiNg•PriNt•Mail–aurOra, CO

editorial contributorsbonnie ayerSkareN Ball

MiChael duFFybrian fiSher

glOria gOMezJeaN wiCker

OOM aNd ChristOPher Marquardt

board of directors PaMela MCiNtyre, Chair–NOrth readiNg, Ma

rOBert wilBer, ViCe Chair–FraNkliN, MadaN dOrNey, treasurer–MONrOe, Ny

lisa PetersON, seCretary–deCOrah iawOOdy CrOuCh–sCarsdale, Ny

Crystal elliers–slidell, laerika PaNiCO–MiddletOwN, Md

kris sadeNs–ChiCagO, ilkareN l Ball, PresideNt& CeO–the Sturge-Weber foundation

honorary board MeMbersliNda laraCh COheN–New yOrk, Ny

staN M. Fisher–BigFOrk, Mt rOy gerONeMus, Md–New yOrk, Ny

JOsePh MOrelli, Md–aurOra, CO gerard e. PuOrrO–waylaNd, Ma

MelaNie wOOd–Bellaire, tx

Medical advisory boardCraig Burkhart, Md

JeFF lOeB, MdrOy gerONeMus, Md

MustaFa sahiN, Md, PhdadrieNNe haMMell, Md, Phd

tiNa alster, MdJONathaN PeVsNer, Phd, ChieF sCieNtiFiC OFFiCer

sWfirn advisory councilJOhNathaN PeVsNer, Phd

dOug MarChuk, PhdJeFF lOeB, Md, PhdkristiN kelly, Md

consultantsJaCk arBiser, Md PhdJOsePh MOrelli, MdlyNN ChaPieski, PhdJOhN MullikeN, MdJerOMe gardeN, Md

tiM Murrary, Md, MBadOrOthy heNdriCks, Md

thuy PhuNg, PhdraNella hirsCh, Md

rOBert ritCh, MdsharON lehMaN, Md

OON tiaN taN, Md

The SWF is a member of the National Organization for Rare Disorders (NORD), American Brain Coalition (ABC), The Coalition of Skin Diseases (CSD),

and the Association for Research in Vision and Ophthalmology (ARVO).

Table of ConTenTs

3 A Message from the CEO by Karen L. Ball

4 Research Round-Up

5 International Scene

6 The SWS Journey: The Young and Young at Heart

8 Australia–A Trek to Remember

10 Members Moving Us Along

12 Members Milestones

14 The Back Page

15 Centers of Excellence

Volume 30 Number 3 | august 2016

On the cover: Beau Arch, photo by Heather Burbrink Photography

Branching Out

Port-Wine Birthmarks (PWB) on the skin are developmental abnormalities in blood vessel formation (capillary malformations) that are more extensive and darker than the pink capillary birthmarks often seen at the nape of a baby’s neck.

Sturge-Weber syndrome (SWS) is a rare congenital condition usually consisting of a facial port wine birthmark, glaucoma, and seizures, (although not all of these symptoms may be exhibited).

Klippel-Trenaunay syndrome, or KT, occurs as the result of a congenital vascular malformation in an extremity, such as an arm, leg, or foot.

The SWF is a clearinghouse of information for Port Wine Birthmarks, Sturge-Weber syndrome, and Klippel-Trenaunay syndrome.

the sWf policy stateMent:In implementing the purpose of The Sturge-Weber foundation to improve the quality of life for individuals with SWS and their families, The Foundation will act as clearinghouse of information, provide emotional support, and facilitate research on PWB, SWS and KT.

As a clearinghouse of information, The Foundation will seek information regarding management and treatment techniques and suggestions concerning education and emotional support and will facilitate the dissemination of appropriate information.

If, in facilitating research on PWB, SWS and KT. The Foundation provides financial or other support to a particular research project, The Foundation will base its decision upon need, The Foundation’s financial resources, and medical advice.

the sturge-Weber foundation | www.sturge-weber.org | [email protected] 3

THe PaRTY Isn’T oVeR.

It has been almost 30 years of building an organization based on faith, hope and love. It’s been a cherished party filled with celebration and joy amidst tears and fears, but made richer by the presence of each person caring and sharing with us. What we have learned is that connections made through the SWF can last a lifetime and bridge the years and miles. Collaborations can drive research to find what caused Sturge-Weber syndrome and

to generate more research to provide even more answers and cures. We also know that with your steadfast and enduring care through volunteering, participating in events and research and your financial gifts that the SWF has been sustained for the newest additions and repeat customers in need of resources and support.

Newest additions like Annika and Beau need your continued commitment to ensure their future too has hope and promise and a vast network to make lifelong friends in support and fun. No matter where we are in the world these friends sustain us in good times and in the challenging times.

The Patient Engagement Network (PEN) and the Sturge-Weber International Research Network (SWFIRN) members need your support as they work to achieve the goals that are sometimes evident and easy and sometimes elusive and energy

consuming. They need to hear from you what your concerns are not just medically but socially, psychologically and financially.

The consistent support of our members means the SWF can keep the network going for the friends who have been at the party since it began and the families who are standing at the door. YOU make this life have meaning and give not only me but all of us inspiration to continue the good fight for those we love and serve each day.

With faith, hope and love,

Karen L. BallPresident and CEOThe Sturge-Weber Foundation

our SWS patient regiStry iS noW up! go to www.swsregIstry.orgtO Be aware aNd register yOurselF Or yOur Child. tOgether we’ll Make sCieNtiFiC PrOgress.

by Karen L. Ball, SWF,President & CEO

A Message from the CEO

Family Connections Newborn Beau Arch’s parents Witney and Jason met the PEN members in New Orleans in a roundabout way. Kris Sadens of Chicago went to high school with a friend of Witney. The friend connected them via Facebook and Witney spoke to Kris by phone, who told her about the meeting in New Orleans, where the Arch family lives. Kris suggested they meet his wife Kellie at the meeting. Witney and Jason went to the PEN meeting and met Karen Ball and Brian Fisher and sat in on one of the meetings. Witney is now a part of the PEN committee.

The cover photo story is a lesson in friendship too. The photographer is Witney’s friend who gifted the photos to her. They had arranged to have photos taken but after Beau was born, Witney hesitated and wanted to cancel the sessions – just trying to come to terms with the port wine birthmark and the SWS diagnosis. Heather, the photographer, was insistent that they capture those precious moments so they all could heal and could help other parents who were going through the same thing. Witney says, “I am forever grateful.”

COVer PhOtO stOry


THanks & CongRaTs We thank Charles Swindell, PhD for his loyal and knowledgeable service for the past 5 years as the SWF Chief Scientific

Officer. Charles helped us through the process of getting our International Registry up and running and kept us from straying beyond the allowable borders of the registry.

Jonathan Pevsner, PhD is the new Chief Scientific Officer for the SWF.

Lan Huang, PhD of Boston Children’s Hospital Receives Lisa’s Sturge-Weber Foundation Research Fellowship Award.

Dr. Huang is an instructor with the Vascular Biology Program at Boston Children’s Hospital. Her recent work has established that the GNAQ mutation in SWS and facial capillary malformations (CMs) is enriched in endothelial cell (EC) populations. The work will extend these findings and include a study of ECs in brain.

“We congratulate Dr. Huang who has worked tirelessly towards the advancement of SWS research,” said Karen L. Ball, SWF President and CEO of the SWF. ”The Sturge-Weber Foundation is honored to present Dr. Huang with the inaugural Lisa’s Sturge-Weber Research Fellowship Award, and look forward to the positive impact that she will make in the lives of the patients and families with SWS.”

“We are delighted with the selection of Dr. Huang as the first recipient of the fellowship and are excited about her proposed research,” stated the family who donated the funds to establish the inaugural award. The family wishes to remain anonymous to focus the

attention on “Lisa’s Sturge-Weber Foundation Research Fellowship Award.”

sWfIRn meeTIng In aTlanTa, ga The Sturge-Weber Foundation

International Research Network (SWFIRN) will have its initial meeting in Atlanta GA on September 12-13, 2016 at the JW Marriot. The mission of the SWFIRN is to provide a forum within the domestic and international medical and research community to foster collaborative research, consensus guidelines and to develop improved treatment models while facilitating clinical studies. Researchers from US, Canada, UK and Europe will gather to share research abstracts, participate in clinical issues panels as well as formulate and issue panel proposals. As of this date, invited speakers include• Veronica Kinsler, MA, MB,

Consultant in Paediatric Dermatology at Great Ormond Street Hospital, London,

• Heather Etchevers, MD researcher at the French National Institute of Health in Marseille

• Serguisz Jowziak MD of the Children’s Memorial Health Institute in Warsaw, Poland

• Catherine van Raamsdonk, MD, Dept of Medical Genetics at the University of British Colombia, Canada

• David Siderovski, PhD, Dept of Physiology and Pharmacology at West Virginia University,

• Silvio Gutkind, MD, of the Dept of Cell Biology at Univ. of California in San Diego.

Organizing and chairing the event are

Jonathan Pevsner, PhD of Kennedy Krieger Institute in Baltimore and Douglas Marchuk, PhD of Duke University, NC.

sWf ed foRumPreceding the SWFIRN event there will be a SWF Education Forum on Saturday, September 10 at the JW Marriot in Atlanta. Similar to Forums in Detroit, Philadelphia, and Boston, there will be speakers of interest to SWF families and a chance for parents and children to meet and socialize. Families in the Atlanta area are invited to save the date and look for an email and a written invitation in the near future.Contact [email protected] for more details.

Pen uPdaTeThe Patient Engagement Network (PEN), which held its steering committee meeting in New Orleans in May, will meet in tandem with the SWFIRN at the JW Marriot in Atlanta, GA September 12-13. The meetings are held together with breakout sessions so all stakeholders are in the room for the common directions based on the patients’/caregivers’/siblings’/families’ interests for research. The researchers and clinicians on the SWFIRN are also part of the PEN. Dr. Anna Pinto of Boston Children’s Hospital is the SWFIRN liaison to the PEN. Committee members are Kellie Sadens, chair; Witney Arch, Davis Argersinger, Emily Argersinger, Kaelin Ball, Karen Ball, Jillian Barnes, Michelle Daoust, Laura Embrey, Brian Fisher, Gloria Gomez, Mary Leonard, Jeffrey Needham, Andrea Parks, Madhurima Paturi, Candace Roberts, Kimberly Slater, Julia Terrell, Stephanie Tikkanen, Anne-Marie Vititoe. The PEN is supported by the PCORI grant which the SWF received in April to provide travel and operational expenses for SWF volunteers.

[ PROMOT ING NEW MODELS OF CARE ]

Research Round-Up


International Scene

sWs india support groupLakshmi Menon in Mumbai and Geetha Narayanaswamy in Pondicherry, have been knowledgeable and willing spokespersons for the SWF for several years. They field questions from families all over India and their compassion is evident when faced with social and medical concerns we here in the U.S. may not be familiar with.

Geetha and her husband Bala have two sons, one a teen boy with SWS. They are proficient in many of the Indian dialects that can challenge communication. When they visited the U.S. a few summers ago, they stopped by the office here in NJ and then visited with Linda and Rolando Cohen and their family in NYC.

Lakshmi Menon was on the SWF 2012 Faces of Miracles Calendar. She is a librarian specializing in documentation of development issues. She has a port wine birthmark but no history of seizures; however glaucoma is a severe concern. She is also a health activist and a supporter of research. She has been outspoken on the Yahoo Support Forum in a variety of topics including coping with SWS on a social level.

So it is no wonder the SWS India Support Group is in such capable hands. As more people have access to Internet communication, the SWF receives queries from around the world – a young family in Bhutan (in the Himalayas) – a doctor in India concerned about his newborn grandchild. It is not easy to follow-up with these requests given the pressures of family and work. Geetha and Lakshmi always respond with knowledge and empathy.

sturge-Weber italiaOur correspondent in Italy reports that their organization is official now and thriving with 48 families. Their website is www.sturgeweberitalia.org with SWF

members Graziella Bevilaqua, president and Giorgia Sardino,VP.

The SWF provided them with a list of families in Italy that had contacted us over the years and they networked with them. We also provided a list of physicians and hospitals they can use as a basis for a more complete resource list. When we receive a request from Italy for information and participation, we provide basic help and then send the contact info to SWSItalia for local outreach.

aMigos con sWs en chile

Just recently a small group of Chilean SWF members answered the request and volunteered to be our outreach in Chile (and other countries in South America). These members have always been ready to chat with other families but now there is a more formal network. Thanks to Patty Morguez, Laura Zegers, Felipe Rozas and Rodolfo Guerra, for getting us started.

sWs friends in nzRecently, SWF members Janine and Greg Hawkins and their family moved from South Africa to NZ and were eager to gather a list of local SWF families. There were only about a dozen registered with the SWF, but Janine jumped in and offered to be the hub of the wheel to get the network going.

aMigos con sWs en puerto ricoMedical Conference “It is not only a Birthmark”

On Wednesday, April 27, 2016, the Puerto Rico SWS Group celebrated our SWS First Medical Conference and SWS Awareness Activity named “No es tan solo un lunar” (Is not only a birthmark). Fifteen (15) patients attended the event, held at Medical Sciences Campus University of Puerto Rico. The activity started with a get-together. Although this was not the first event celebrated in the island, there were many new members (currently we are 26 patients in the group).

SWF VP of Operations, Brian Fisher, visited the island for first time. Brian met the group and talked with the doctors. Also he presented the role of the SWF and explained all their ongoing projects.

During the conference, there physicians presented the following topics:• Dr. Luis Ortiz Espinosa–Effects of

Pulse Dye and YAG Laser on Port Wine Stain

• Dr. Ignacio Pita and Dra. Maricel Vázquez–Neurological Effect in patients with SWS

• Dr. Víctor Maldonado–Glaucoma in patients with SWS

• Dr. Javier Calero–Oral Care in patients with SWS

• Dr. Mario Polo–Orthodontic Problems in Patients with SWS

The patients and their families enjoyed

Continued on page 14...

rodolfo guerra

sr. and sra. robert beCerril helping at registration


The Young:

annika Marquardt, 5 Months old

We are the Marquardts: Christopher, Oom, Metta and Annika. Christopher and Oom met in Thailand at a meditation retreat about 8 years ago. After dealing with some immigration paperwork, we settled in Portland, Oregon and have been here for about 5 years. Our elder daughter Metta just turned three and we hoped to have a sibling for her to play and grow up with.

Our second daughter, Annika, was born this year, early in the morning, on Earth Day. The birth was relatively smooth and quick. The nurse and midwives commented on the spiritual nature of the birth–we all (especially Oom) felt relaxed (comparatively) during this delivery. There was some redness on our daughter’s face and the friendly nurse said it was likely due to bruising. I guess some kids–when born ‘quickly’–get facial bruising from exiting the birth canal too quickly.

We were so relieved the 9 months were over and we had our daughter…even though we were a bit stressed by the bruising, but we were otherwise thankful…she was healthy! Later that afternoon, our pediatrician came in and told us she had some concerns about the ‘bruising’ on her face due to the time it took for the blood to come back after depressing a spot on her face. She mentioned “Port Wine Stain” and “Sturge-Weber Syndrome” (I’m sure she said that, but we weren’t sure what it was she’d said). Her demeanor was very matter of fact and, although she was a bit cautious with her words, she wasn’t overly apologetic or timid with diagnosing this.

Upon hearing this and panicking and feverishly searching the internet…we, initially, were a mixture of sad, devastated, hurt, confused,

overwhelmed. And, we were floored. Our expectations were shaken; our daughter was ‘less than’; she would be mocked, she wouldn’t be able to get married–and worst off, there could be cognitive delays–she’d never go to college.

Oom is from Thailand and her extended family is mostly still there. Christopher’s family is from back East; between us we have no family members

in Portland. So, at the time of birth, we were relying on some help from the local Thai community, Oom’s friends from the mom’s group, parents from Metta’s preschool, and our neighbors. The initial support and caring for us was key. But since no one had ever heard of SWS, much of the support, though helpful, was a bit disconnected from the actual ‘severity’ of the situation. But that also brought us even closer together as a family, mainly because we are the 4 people that are going through it together.

We were really vulnerable during the first couple of weeks, especially after each visit to the doctor’s office and hearing more about Annika’s possible symptoms. Letting the reality set in was really hard and the phrase like, ‘She will have glaucoma for the rest of her life.’ was echoing in our ears. Instead of celebrating the joy of having a new

baby, we were looking at our daughter with a heavy heart full of worries and fear. But then our wonderful glaucoma ophthalmologist said something so valuable, she said it’s okay to feel sorry for the loss of the child you didn’t have. Realizing that this is the child that we have and she’s gonna be okay because the universe has chosen us to be her parents, we got over it and started looking forward and seeing what we can do to support her.

We took all the help we could get initially. We talked to doctors, we looked up SWF, we checked out support groups…we rallied as quickly as possible to get supports in place, because when we were down and feeling sad/sorry/dejected, it was painful. SWF was integral in those initial few weeks–we emailed many parents who’d been through similar experiences and they buoyed our

hopes during some very low moments. We also decided to go to therapy (couples) to have a third party help negotiate some of the trickier emotions that seemed to take roost in our home. There has been so much positivity from some unlikely places and some great tips from sources like: pamphlets from SWF, Facebook, and a vision

impairment group at our local eye doctor’s office.

We felt the more resources we could get associated with, initially, the more supported we’d feel. But, by far, the single most helpful factor in our dealing with the diagnosis has been our meditation practice. We have been able to look at the big picture and the impermanence of things with a level of tolerance that would have taken a much longer time to reach without it. We have to remind ourselves to be in the moment and enjoy our time with our daughters without worrying about the future (too much) and take things as it arises and passes away.

As the trials and tribulations continue:

The SWS Journey: The Young and

metta and annika


(already two surgeries for glaucoma and 4 examinations under anesthesia), when, how and why will we consider laser treatment to reduce the PWB, how to set up an educational fund, how much to tell strangers about our daughter, etc. We realize that there are always struggles with having kids, it’s just that some of our struggles are a little more apparent at face value.

Annika is great, she’s cute, she coos up a storm…watching her kick in the bath is hi.lar.i.ous. Metta has also adjusted well to our new situation. And apart from poking her little sister once in a while, she has been really helpful. She would help shake the eye drop bottle, pick an eye patch, and one day she told her friend ‘My Little Pony has glaucoma in her right eye and I’m gonna patch her other eye.’ That was super cute. We feel really blessed with our family and both our daughters. Sure, there will be struggles, but we know we’re not alone, and thanks to all the people who’ve gone through what we’ve been through - we know we’ll all make out OK.

After all, Metta’s name, a Buddhist term, means compassionate love and Annika, also a Buddhist term, means no suffering. ~Chris Marquardt

The Young at Heart: Jean Wicker, 91

I was born January 2, 1925 in Snake Spring, PA; delivered by an old country doctor. They noticed the birthmark and thought it was because my mother had a small frame and I was a large baby so the doctor had to use forceps. Nobody knew what it was back then.

I went to Hollidaysburg Grade School and Hollidaysburg Area High School. I was the only child in my town with SWS. I went to Dr. McKinney, a skin doctor, and he was the one that told me the name – Sturge-Weber. He sent me to Hershey Medical Center where I met

Dr. Ernest Manders who explained it more. I never had seizures.

I didn’t know what to tell people when they asked other than it happened when I was born. I was known in town as the kid with the birthmark. Grade school was hard, but in junior and senior high school the kids got used to me, I guess, and they were more mature.

I worked in Florida for the phone company and got my beautician license when I moved back to Hollidaysburg. I worked for a radio station for awhile, then with the phone company in Altoona, PA I worked for Bell of PA, then Bell Atlantic, now Verizon, for 24 years.

I married a very handsome man who became Chief of Police for a time in Roaring Spring, PA. He died in 1972. We have 5 children, 4 daughters and one son, 8 grandchildren and 4 great-grandchildren. My daughter Sheri McGinnis is the SWF member who told me about the SWF.

I heard about Sturge-Weber syndrome about 1982 from Dr. Manders at Hershey Medical Center. He recommended lifting my lip as it was swaging and they were doing laser treatments to lighten the color. I went

with the surgery to remove some of the puffiness from my lip and cheek and to bring my lip up to the normal position. I did try a few laser treatments but my

birthmark was too dark and I was too old to go through that. Dr. Manders took a lot of pictures and wrote me up in medical journals. I was the most extensive case they had seen up to that time.

Our minister when I was a young lady noticed an article in Readers Digest about a rich girl who had a birthmark on her cheek. She was taking Art in college and an idea came to her – if she could cover things with paint why not make some cosmetic to cover her mark. She had a studio in NY. I called her and made an appointment to meet her. (I had my beauty license by that time). She put make up on me and offered me a job to apply makeup to people who would benefit in big department stores. Her company name is Covermark. At the time it was not waterproof as it is now.

I was 22-years-old and did not have the courage to do makeup on other people or show them how to do it. She understood, so I did not go to work there but have bought makeup from that company ever since.

Looking back, I would say to young people or parents of children with a birthmark, “You can be anything you want to be, you can do anything you want to. The makeup does a wonderful job if you feel that’s the way you want to go. My husband would kiss me on both cheeks and say, “I love you with or without makeup.” I had a good job, nice home, took some wonderful trips, lots of friends, and my family was always there for me.

the Young at Heart

people remember me because of

my face and that is a good thing. i

would tell young people not to let

anything or anyone get you down.

you are beautiful inside and out.

~Jean Wicker


AustrAliA – A trek to remember

My wife Melissa and I are parents of Tom, a handsome preschooler, and Emma Grace, a beautiful 5-year-old girl who has bilateral SWS. Emma has had a tough start to life and endured everything SWS can unfortunately dish out. At 5 years, Emma is still unable to walk or talk and has a severe developmental disability as well as vision impairment. But she is able to communicate in her own special way and she has a smile and laugh that would light up a room. She has a fighting spirit and is without a doubt the bravest person I know.

Our family was lucky to attend the 2015 SWF International Conference in Chicago. It was a life changing

experience for us to meet and speak with so many amazing people also living with the challenges that come with SWS. I was so inspired by the conference and the great work of the SWF that I decided to do something to support the Foundation and others living with SWS. So earlier this year my wife and I started “The Grace of Emmy Duffy Foundation” which is aimed at raising funds to support the SWF and to assist Australian families dealing with SWS.

I wanted to do something significant and challenging to launch the organization and raise funds. In March of this year, I and 8 colleagues from work, along with three-time Paralympian Don Elgin, took on one of the most physically challenging and emotional rewarding adventures – we tackled the grueling Kokoda Trek in Papua New Guinea.

The trek is hugely significant for all Australians as one of the most important battles was fought here in WWII. Kokoda is where the Japanese were defeated as they attempted to reach their final port to invade

Australia. More than 600 Australians lost their lives during the battle of Kokoda. During our 8 day trek we retraced the footsteps of the

brave Aussie

soldiers who fought for our country on that very trail back in 1942, and we paid our respects for everything they went through along the way.

The Kokoda trek is by far the most physically challenging experience I have ever undertaken. As we walked the trek, we learned what the Aussie soldiers experienced during the horrendous four month long bloody battle. Along with the physical challenges, the emotional element was also extremely testing. For me, the emotional side was also amplified knowing that we were walking this trek to support the Sturge-Weber community. I remember passing through many small villages in part of the most remote jungle in the world. There was no electricity and families lived in grass thatched huts. They were such happy and loving people, yet they had so little. I couldn’t help but think that I was so lucky that Emma had come to us and had not been born into one of those villages. It was not that she wouldn’t have the love and care, but life was so primitive

i wanted to do something significant

and challenging to launch the

organization and raise funds.

in March of this year, i and 8

colleagues from work, along with

three-time Paralympian don elgin,

took on one of the most physically

challenging and emotional

rewarding adventures – we tackled

the grueling kokoda trek in Papua

New guinea.

miChael duffY


AustrAliA – A trek to rememberthat she could not have received the medical care and support she so badly needs.

The funds raised during the trek totaled $21,586 (AUS) . It was incredible to feel the support of those who contributed to the cause – friends, family and complete strangers. To know that each person who donated had read Emma’s story and learned about SWS was so uplifting to me and my family.

We donated a third of the funds (about $5,400

US) to the Sturge-Weber Foundation. The remaining funds will go toward supporting Australian families living with SWS and helping them with the

out of pocket costs associated with these unexpected extended stays in hospitals that SWS often brings. Donating this money to the SWF and the initial support that we have already been able to provide to Australian families has been one of the proudest moments of my life.

I encourage anyone out there who is thinking of raising fund to support the SWF to just give it a go. It doesn’t have to be something as extreme as walking Kokoda, but any effort big and small will go a long way to help raise much needed funds to support others living with SWS and help find a cure.

Visit the SWF website to read the whole story and see the amazing photos of Mike and his crew and the land they trekked through. Words cannot take the place of the photo story there. Visit Get Involved > Volunteer Champions.

Recounted by Michael Duffy, of Donvale, Victoria

i wanted to do something significant

and challenging to launch the

organization and raise funds.

in March of this year, i and 8

colleagues from work, along with

three-time Paralympian don elgin,

took on one of the most physically

challenging and emotional

rewarding adventures – we tackled

the grueling kokoda trek in Papua

New guinea.

don elgin, coMpetitor in 3 paralyMpic gaMes, 4 World chaMpionships, 2 World cups and the coMMonWealth gaMes says, “it Was physically, spiritually and Mentally challenging and a life changing experience. it Made it all the More reWarding knoWing that With each step i Was helping raise aWareness for sturge-Weber syndroMe and funds for the grace of eMMa duffy.”


JereMy’s pile of Miles adding up

In 2014, Amanda Huston of Yelm WA, mom of Jeremy who is now 15, organized the fundraiser “Jeremy’s Pile of Miles.” With May being Sturge-Weber Syndrome Awareness Month, she and a team of runners used the month to continue bringing awareness of SWS.

In 2014, Amanda completed the Portland Rock’N’Roll Half Marathon as her inaugural run for Jeremy’s Pile

of Miles. Since then, fellow runners and supporters have helped spread

SWS awareness by participating in the Capital City 5K, the Minnesota Marathon, and the Capital City Marathon. Many other runners participated in events all over the country to show their support for Jeremy and SWS. This year, Jeremy’s Pile of Miles kicked off their fundraising season with the Eugene Marathon in Eugene, Oregon May 1. Amanda and a team of seven devoted runners participated, all of whom are connected to the military. The team includes Kelly

Linman of Puyallup, JoAnne Bernhardt of Yelm, Asuka Christmas of Lacey, Bobbie Sheff of Lacey, Ann Lasola of DuPont, and Laura Gaxiola of Bremerton.

Amanda wants everyone to know that anyone can participate in Jeremy’s Pile of Miles by joining a local race - running, walking, swimming or even hiking. It is a

free event and she just asks that you pledge your miles in honor of Jeremy and others who live with SWS. Participants are able to print out their bib to wear while they complete their miles, and the goal is to inspire conversation about SWS.

You can read more on the SWF website – Get Involved – Volunteer Champions.

Heather Short of Northwest Millitary.com has written a great article, “Running for a Cause” that brings Amanda Huston’s story to life.

tricia’s tots Trish Bourne was named Wamesit Lanes Person of the Week in her home town of Tewksburg, MA.

She was nominated by the mother of one of her dance students who said “I think Trish Bourne would be an excellent candidate for the Tewksbury Person of the Week. She is a small business owner of Tricia’s Dance School since 1996. She has the patience of a saint and has been teaching my girls dance for the past 8 years. In her spare time she is an avid runner. She has even participated in the Boston Marathon eight times. When she is not dancing or running she is also an advocate for the Sturge-Weber Foundation.”

After one of the many SWF fundraising events Trish Bourne has run at Tricia’s Tots School of Dance, the raffle winner was lovely Brianna on the right with her charming cousins Paige and Hailey. She won $100 worth of free dance lessons.


[BREAK ING THROUGH STEREOTYPES ]

Members Moving Us Along

society for pediatric derMatologyKatie Grey and Solveig Hagen, fourth year medical students at the University of MN Medical School have been enthusiastic partners with the SWF since 2013. They did the survey of young adult on attitudes about port wine birthmarks that many of our members contributed to.

In July they represented the SWF at the annual meeting of the Society for Pediatric Dermatology in Minneapolis, MN. They were ably assisted by SWF volunteer members Annette Blazek and Aimee Royle, (mom of 3 year old Payton) at the display table. Aimee says she was glad she experienced the meeting – Payton’s dermatologist was one of the doctors leading the meeting.

Month of aWareness t-shirt booster caMpaignThank you to everyone who supported our campaign! 246 shirts are now being worn around the country and $4269.10 was raised for Sturge-Weber Foundation programs. Missed the campaign? T-shirts cannot be purchased now but we will run the campaign next year during Month of Awareness with a new design. “My

daughter, Chloe and I raised awareness the month of May at my job/her K-8 school. ” ~Robin Nadler in CA

aMazon sMileWho loves to shop on Amazon? Did you know that if you shop on AmazonSmile, AmazonSmile donates .5% of your purchase back to The Sturge-Weber Foundation. That may not sound like a lot but when you shop all year long it adds up!! It is so easy to do. 1. Go to www.AmazonSmile.com. 2. A pop-up box will appear and ask you to sign in using your regular username and password. 3. Once you’ve logged in, you will see a screen asking you to type in the charity of your choice. Type Sturge-Weber Foundation. Click Search. 4. The first option in your search should say Sturge-Weber Foundation and click Select. 5. Start shopping.

do you have an eMployee giving caMpaign at your Workplace?The time of year is coming up to sign up for employee giving campaigns. Your gifts through your employee giving campaigns are greatly appreciated. Many companies have matching gift programs too. Last fiscal year the Foundation received $34,681.93 through employee giving campaigns, including the CFC. In addition, we received $23,422.78 through employee matching gift campaigns. Thanks so much for your generosity and continued support!

coMbined federalcaMpaign (cfc)Are you a federal employee or have friends and families who are? We hope you will consider a gift to The SWF again or for the first time and/or encourage those who have this opportunity to contribute to The SWF CFC Campaign. The Sturge-Weber Foundation’s CFC number is 11857; we are part of the Health & Medical Research Charities of America. Thank you for your consideration and continued support.

vehicle donationA free, convenient service for converting that extra car, truck, or RV into a tax deductible donation benefiting Sturge-Weber Foundation. You can donate online or call 877-999-8322 to make your donation. Don’t donate your car or truck to some charity you have never heard of. Our trusted service makes sure your vehicle is properly handled so you get your tax deduction and your charity, Sturge-Weber Foundation, gets the benefit of your donation. Information about vehicle donation at www.sturge-weber.org, bottom menu, Ways to Give.

the Willard faMily hosted a fundraiser/awareness event in honor of Sydney this summer. They showed the Positive Exposure Film “On Beauty” at a local venue and raised $2,665 for the Sturge-Weber Foundation. JennY and sYdneY Willard


From the UK we hear that Alex Buchanan is a volunteer at Alder Hey Children’s Hospital in Liverpool and was recently named Most Committed Volunteer and made a senior team leader. Alec and his twin sister celebrated their 29th birthday in April, In May, Alec could count 25 years since his hemi surgery as a child. Mom Lynn says that they weren’t given any alternatives at the time and in some ways that was an easier decision to make.

Trevor Coffee graduated from Nathan Hale High School in Seattle in June and will be attending Highline College in the fall.

Theresa Lamb of MA met Jennie Rodriguez and her daughter Maddie at the SWF 2013 Conference. They had a happy reunion in Maryland where Jennie and Maddie live.

Julie and Charles Shire are happy to announce that their granddaughter Kenedee Ann is officially their daughter now and forever. Kenedee is now 4 years old and this photo

shows her happy and bright outlook as she began her birthmark journey 3 years ago.

Sarah Faulkner celebrated 2 years of being seizure free after her surgery at Children’s Hospital of Orange County (CA) by, among other things, enjoying a trip to London with her family and experiencing the view of London from the London Eye – the tallest Ferris wheel in Europe. Paul Harper lives in Concord MA and celebrated his 50th birthday in June. He continues to work for the Army Corp of Engineers as a mail clerk, where he has been employed for the past 17 years. Mom Helen Harper lives in Nashua NH and Paul is planning several train trips in NH this summer.

Cody Allen in TN, just turned 25 and is a proficient musician on piano, guitar and mandolin.

Marcus Ballard in TX just turned 9 and is an honor roll student in school.

Last issue of Branching Out had a photo of Makayla Vaquilar who was in the running for Young Miss Rosamond 2016 (CA). She won the title – and gave a heartfelt acceptance speech giving a “royal tribute to the SWF”.

trevor Coffee

theresa lamb With Jennie and maddie rodriguez

kenedee ann shire

sarah faulkner in london

CodY allen

makaYla vaquilar

marCus ballard


The Paturi and Terrell Families had their annual reunion in Florida in July. Marissa and Keerthana and their families went bowling to help support Keerthana’s beautiful school Conductive Education Center of Orlando (CECO).

Keerthana was showered with love and attention by all the teachers and parents. It was a sight to be seen not just the love and attention but Keerthana has come alive. Afterwards we all went back to the Paturi’s home where the girls could play undisturbed all afternoon into the evening.

The most exciting times were seeing Keerthana walk with little help and to see her scoot around after Marissa to

keep up. We were reminded that kids in general do things for other people that they wouldn’t do for Mom and Dad.

When Keeerthana was asked if she could feed herself she said “yes” even though we were feeding her. Mom said “no, she won’t want cake” but soon enough she was saying “Cake” and ate it. We all laughed. We found them later in a tent just playing without any struggles just having fun.

A day that we will always hold dear as these two little girls have evolved since we first met in Orlando in 2011. Can’t wait to see what next year brings!

~Julia Terrell

Members Milestones

az faMily day The SWF families in AZ held an Ice Cream Social at the Sugar Bowl in Scottsdale in May to the delight of 5 families. They are already talking about their next get-together. Andreya Hernandez-Garcia was the hostess and the pretty ladies pictured are Selena Gephart, Aimee Godfrey, Laurissa Hoth, and Valentina Jaeger.

Camille garCia having a fun ponY ride

• Picnic in the park• Ice Cream Social with Victorian

dress up• Bowling alley party• Swim club pool party• National heritage food festival

(kielbasa and tacos anyone?)

it takes ONe iNterested PersON tO Call us aNd the swF OFFiCe CaN PrOVide CONtaCt iNFO FOr swF FaMilies iN yOur area.

MeMbers Milestones cont... Joyful Reunion

faMily day ideas:

keerthana paturi With help from her mom marissa terrell readY to boWl


When you are chatting: remember not every facebook page that has sturge-weber in its title comes from us – we have an official general page – the sturge-Weber foundation – and a private (secret)

page only for swF members who ask to be in – World of care and share netWork. spreading the word is great – but only the messages on those two pages are sent by the swF and come to the swF.

the blog sectIon on the websIte haS MaNy eNlighteNiNg and inSightful perSonal StorieS aNd COMMeNtaries By MeMBers aNd swF staFF. Visit the learNiNg CeNter > liBrary > BlOg.

take a Break aNd eNJOy.

[ CENTERS OF ExCELLENCE / REMEMBER ING LOvED ONES / ART ExH IB I T ]

The Back Page

Remembering Loved Ones[WE HONOR NOT jUST

THE IR L I vES, BUT THE LEGACY THEY LEFT. ]

We are sad to report the death of Mark Blankenship, in TN, which we belatedly heard of through a memorial donation. Mark was 25 and died September 2014. Mark’s parents Mike and Joy and his sister Bonnie have been SWF members and supporters since 1993. Time does not diminish the sorrow we feel at the death of a courageous SWS son.

Megan Bayse’s grandfather passed away in May. John Leonard Barnard

of CT was a proud US Army veteran. Megan’s parents are Amy and Joseph Bayse in Charlotte, NC.

David Chepokas’ step-father William Rouch passed away in April after many years in which David’s mom Jeanne Rouch was his loving caregiver. They have been with the SWF since 1990. Bill was a US Navy WWII Medic with the Seabees.

offICe sPaCe A happy announcement that Julia Terrell has joined us as our social media staffer. Her savvy and experience with social media outlets for the SWF is a welcome addition. Julia will work from home in Sicklerville, NJ (south of Philly) but she has already taken the reins on our daily Facebook presence.

baCk To sCHool WITH sWf

noW is the tiMe to plan for back toschool supplies froM the sWf• Color Me Different, Color Me the Same, coloring

book for school kids• Someone Special Just like Me, picture book for

early grades• Kids Guide to SWS, good for middle school

and up• ER Guide, for school nurses, caregivers and

parents• Gateway to Understanding, general info

brochure for everyone.

the conference, learned about Sturge-Weber syndrome and by asking questions at the end of the event cleared up many doubts and clarified many concerns. Definitely, it was a success.

The word “Thank you” is too small to express my most sincere gratitude to all the people that made this event possible. Thanks to the SWS Foundation, mainly to Bonnie Ayers and Anne Howard for their support and Brian Fisher for his visit; to the patients, who traveled on a rainy day from different cities to attend the event; to the doctors, who demonstrated their genuine interest and commitment, offering their knowledge and time; too Rene Rosado, our EXCELLENT professional photographer who infected the group with his energy and enthusiasm; to Dra. Lida Orta for her hospitality. And to my special and dearest brothers Gustavo and Gerry Gomez. To Alba Cardona, Limaris Reyes, Crimy Rosado, Evelyn Diaz and my husband Hector Soto for their support.

Again, the PR Sturge-Weber Group did it! Certainly, we are not just friends, we are FAMILY.

~Gloria Gomez

international sceneContinued from page 5

A publication ofThe Sturge-Weber

Foundation

Illustrated byGina Going-Raney

Written byCarol Buck

sturge-weber.org/library/patient-resources.html


Six of the eleven children’s hospitals listed as the Top-Rated Pediatric Hospitals in the US by The US News & World Report’s 20 annual ratings are hospitals that have a SWS Center of Excellence.Boston Children’s Hospital (a SWS Center of Excellence) is the top rated hospital.

SWS Centers of Excellence at:

CA: UC Irvine Beckman Laser Institute – Irvine

CA: UCSF Medical Center – San Francisco

CA: Rady Children’s Hospital – San Diego

DE: Nemours/DuPont Hospital for Children – Wilmington

IL: Un of Illinois at Chicago Medical Center – Chicago

IL: Lurie Children’s Hospital – Chicago

MA: Boston Children’s Hospital – Boston

MI: Children’s Hospital of Michigan – Detroit

MN: Mayo Clinic – Rochester Satellite Clinic in Phoenix, AZ Satellite Clinic in Jacksonville, FL

NC: UNC Children’s Hospital – Chapel Hill

NJ: Northeast Regional Epilepsy Group – Hackensack

NY: NYU Medical Center – NYC

OH: Cincinnati Children’s Hospital – Cincinnati

OH: Nationwide Children’s Hospital – Columbus

PA: Thomas Jefferson Univ. Medical Center – Philadelphia

PR: Centro Medico de Puerto Rico – San Juan

TX: Dell Children’s Medical Center – Austin

TX: Texas Children’s Hospital – Houston

hand in hand With the CliNiCal PartNers at the sws CeNters OF exCelleNCe are the parentS and adultS Who sPeNd the tiMe, eNergy aNd ideas that helP the swF serVe FaMilies with suPPOrt aNd eduCatiON.

pen steering Committee at Work and at plaY

amigos Con sWs in puerto riCo.

The stronger the wind, the tougher the trees

Save ThedaTe

education foruMatlanta, gasepteMber 10, 2016

P.O. Box 418Mt Freedom, NJ 07970-0418USA

Change Service Requested

THe sTuRge-WebeR foundaTIon

NON-PROFIT POSTAGE

PAID PERMIT #67

Aurora, CO 80017

c e l e b r a t i n g 29 years of coMpassionate and professional service

this issue is brought to you in part through the generous

contribution of the allergan foundation.

if you have opinions, questions, or articles for branching out, We Would like to hear froM you. please fax, Mail, or e-Mail your Material

to the sWf office ([email protected]). We reserve the right to edit all Materials.

SeptemBer 2016

July 2017

international conferencecincinnati, ohJuly 26-29, 2017

sWfirnpenatlanta, gasepteMber 12-13, 2016

the swF hOlds a sPeCial PlaCe

iN My heart BeCause FiNdiNg

theM was a BlessiNg FOr

MyselF aNd My FaMily.”

~Makayla Vaquilar, CrOwNed yOuNg Miss

rOsaMONd 2016, Ca

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