psf patron, actor john hurt the actor who portrayed the ... · 1 ...finding the cause, discovering...

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...finding the cause, discovering a cure, supporting individuals with this rare genetic disorder NEWSLETTER www.proteus-syndrome.org PSF Patron, Actor John Hurt The actor who portrayed the ―Elephant Man‖ in the award winning film of the same name. APRIL 2010 Our Mission Statement: The Proteus Syndrome Foundation is a voluntary not-for-profit organization dedicated to providing family support in the form of education and networking individuals living with Proteus syndrome with other families and medical professionals. We are also dedicated to raising money to provide far reaching professional health education with our ultimate goal of finding cause, treatments, and the cure for Proteus syndrome. Board of Directors Mary TimmermannPresident Julia DeLoachSecretary Barbara KingTreasurer Kathleen DeLoachFamily Support/Grant Strategist Members at large Linda Benson Dawn White Jon Cohn Pam Goddard Kim HoagConsultant /Grant Strategist Charlie Bargiachi, CPA Brian Kuhn, Attorney at Law International Affiliates: Tracy Whitewood Neal, - Chairperson UK Amanda Wilson Secretary, UK Foundation Yearly Membership $25.00 annual family membership $35.00 annual professional membership Mail to: PSF c/o Barbara King, PSF Treasurer 8485 Dulwich Cordova, TN 38016 USA These dues are to help support the cost of running the Proteus Syndrome Foundation. We ask you to contribute these dues once a year. These dues are voluntary & not intended to cause any hardship to families. Proteus Syndrome Foundations USA & UK unite to gift the Biesecker Lab at the National Institutes of Health $50,000. This is the PSF’s first major gift to support research into the cause of Proteus syndrome. Inside on page 5 you will find more information about the use of this gift in a letter from Dr. Biesecker. . The Proteus Foundations USA and UK would like to thank those of you who donate to the PSF, who donate their time and energy hosting fundraisers for the PSF, those of you who attend and support the fundraisers put on to support the PSF and spreading the word about this syndrome for your dedication. Without you this gift would not be possible. It is extremely difficult for a rare disorder like Proteus, to receive funding on a national level. Although Dr. Biesecker’s lab is funded by NIH, with Proteus included in that funding it will take this foundation’s co-support to move things along at a quicker pace.

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...finding the cause, discovering a cure,

supporting individuals with this rare genetic disorder

NEWSLETTER www.proteus-syndrome.org

PSF Patron, Actor John Hurt The actor who portrayed the

―Elephant Man‖ in the award

winning film of the same name. APRIL 2010

Our Mission Statement: The Proteus Syndrome Foundation is a voluntary not-for-profit organization dedicated to providing family support in the form of education and networking individuals living with Proteus syndrome with other families and medical professionals. We are also dedicated to raising money to provide far reaching professional health education with our ultimate goal of finding cause, treatments, and the cure for Proteus syndrome.

Board of Directors Mary Timmermann—President

Julia DeLoach—Secretary

Barbara King—Treasurer

Kathleen DeLoach—Family Support/Grant

Strategist

Members at large

Linda Benson

Dawn White

Jon Cohn

Pam Goddard

Kim Hoag—Consultant /Grant Strategist

Charlie Bargiachi, CPA

Brian Kuhn, Attorney at Law

International Affiliates:

Tracy Whitewood – Neal, - Chairperson

UK

Amanda Wilson – Secretary, UK

Foundation Yearly Membership

$25.00 annual family membership

$35.00 annual professional

membership Mail to:

PSF c/o Barbara King, PSF Treasurer

8485 Dulwich

Cordova, TN 38016 USA These dues are to help support the cost of running

the Proteus Syndrome Foundation. We ask you to

contribute these dues once a year. These dues are voluntary & not intended to cause

any hardship to families.

Proteus Syndrome Foundations USA & UK unite

to gift the Biesecker Lab at the National Institutes of Health $50,000.

This is the PSF’s first major gift to support research into the cause of Proteus syndrome.

Inside on page 5 you will find more information about the use of this gift in a letter from Dr. Biesecker.

.

The Proteus Foundations USA and UK would like to thank those of you who donate to the PSF, who donate

their time and energy hosting fundraisers for the PSF, those of you who attend and support the fundraisers put

on to support the PSF and spreading the word about this syndrome for your dedication.

Without you this gift would not be possible.

It is extremely difficult for a rare disorder like Proteus, to receive funding on a national level. Although Dr.

Biesecker’s lab is funded by NIH, with Proteus included in that funding it will take this foundation’s co-support

to move things along at a quicker pace.

2

Medical Advisory Board

M.Michael Cohen, Jr., DMD, Ph.D., FCCMG Professor of Oral & Maxillofacial Pathology

Professor of Pediatrics

Dalhousie University

Halifax, Nova Scotia

Leslie Biesecker, M.D. Genetic Disease Research Branch,

National Human Genome Research Institute,

National Institutes of Health,

Bethesda, MD

Debra L. Collins, M.S. Division of Genetics

University of Kansas Medical Center

Kansas City, KS.

Julie Chevalier Sapp, M.S. Genetic Counselor

National Human Genome Research Institute

National Institutes of Health

Bethesda, MD 20892-1253

R. Neil Schimke, M.D. Dir. Of Endocrinology, Metabolism & Genetics

University of Kansas Medical Center

Kansas City, KS.

Joyce Turner, M.S. Genetic Counselor

National Human Genome Research Institute

National Institutes of Health

Bethesda, MD 20892-1253

R. Sid Wilroy, Jr., M.D. Professor of Pediatrics

University Of Tennessee, Memphis, TN

KIM’S CORNER

Hello Proteus Families and Supporters;

I would like to start out by sending my

sympathies to the Lanoo family for the loss of their

beloved son Sammy. I have been in touch with this

family off and on over the years and my heart truly

hurts for this lovely family. Please keep them in your

prayers as they go through this extremely difficult time.

This is a very exciting time for the PSF USA &

UK to be able to give the gift of $50,000 to Dr.

Bieseckers Research project at the NIH. Some of you

may wonder why we have not done this in the past.

Quite honestly, when this foundation started out we

saved and saved and saved our money to give a

research grant. The fact is we were losing our children

and not able to raise the kind of money that would

make a significant difference for research. But we did

have enough money to significantly help our children

and adults with PS. We have purchased wheel chairs,

medications, helped with utilities so families can be

together during difficult surgeries, paid for travel to and

from the PSF conference and, of course, host the

conference. I truly feel that our money has been well

spent in taking care of these things. By teaming up with

PSF UK we are in a position to continue to help our

families and give this very important gift to Dr.

Biesecker. It is our hope to be able to continue to gift

money to his projects concerning Proteus syndrome.

His dedication to this syndrome is beyond amazing to

so many of us who have been lucky enough to know

not only Dr. Biesecker but the many wonderful doctors

at the National Institutes of Health.

I wish each and everyone of you a very

wonderful summer. If you find yourself in Colorado in

July, I would love to have you at the Alex Run!

Take care,

Love Kim

3

This is the contact information for the maker of Kierra’s shoes:

Steve Fletcher, Certified Pedorthist

Richey & Co. Shoes 5335 Wisconsin Ave., NW

Washington, DC 20015

To find a certified pedorthoist in your area go to this link and enter your zip code:

www.cpeds.org

SHOE NEWS! WWW.KEEPINGPACE.COM FOR YOUR

EXTRA WIDE SHOE NEEDS!

The 2010 PSF Family Conference

will be postponed this year.

The Proteus Syndrome Foundation is not canceling the conference but postponing it. We feel that this is

a positive move to wait until the economy comes around a bit and when there is more information about

how our $50,000 gift has been used to help forward the science into PS.

We will be announcing a new date for the conference in the upcoming months.

4

UPDATE: Sebastian

On March 2 2010 Sebastian was walking into class when he lost his balance picking up his IPod, which he had

dropped, and he hurt his leg.

The school phoned to say this had happened, but not to worry, as they thought he had only just twisted his an-

kle. The school strapped it and put ice on the ankle, after about an hour he was still saying it was sore,so the

school rang Don [my husband] and told him, it was agreed to keep an eye on him and if he didn't get any better,

give him another ring and we would come and get him. I was at the hospital with my mum who was very ill.

Well, we did get the call and I went to school to pick him up.

When he saw me he burst out crying and told me he had broken his leg because he heard it snap, he hadn't told

anyone about hearing it snap.

As a safety measure I took him to our General Practioner, who or-

dered an x-ray just in case. All this had taken 3 hours from when he

first hurt it, and he had been sitting there in pain the whole time with-

out saying a word.

That is when we got the news that he had indeed broken the tibula and

fibula about 2" above the ankle on his right leg, this is his worst leg

affected by Proteus.

We then went straight to the hospital where he was admitted to

await surgery.

Sebastian ended up having surgery at 8.30pm that night [Tuesday}

then spent the next 24 hours in hospital.

From Wednesday to Thursday night he just cried in pain he was vom-

iting and very uncomfortable.

On Friday we took him back to hospital to have it all checked again,

everything was OK, but, they thought the plaster cast was too

tight,and they proceeded to remove it.

Sebastian just screamed and screamed to the point where he was hysterical, they put the cast back on like a pea-

nut shell and bandaged it up for the next 4 days until he saw them again on Tuesday, where they promptly put

another fibreglass cast over the lot. He was not happy about this, until he found out the plaster glowed in the

dark, now that was real cool.

We are now approaching the 4 week mark, and for the last month he has not been able to put his foot the

floor, have a shower , have his hair washed, or even sit on the toilet, getting him into the car is quite a mano-

vour.

Life has been quite difficult for us, although Sebastian just loves being in a wheel chair.

Through all this Sebastian has been on Clexain injections to prevent blood clots and he will need these every

day until he is fully mobile again, he is so funny he asks me every morning, " is it time for my needle yet".?

Sebastian has been so brave through all the pain and discomfort of this, hopefully we will only have another 2

weeks to go, but that will depend on the next x-ray.

5

Updates from the Biesecker Lab at NIH: It’s been a busy year here at NIH and we have several exciting projects to update the PSF about. We have been invited to submit the proceedings from the Orthopedic Conference that the PSF supported in 2007 to an international orthopedics journal. As many of you know, we have directly applied some of what we learned at that conference to many of our patients. The advance we are most excited about is the use of guided-growth orthopedic hardware (“8-plates”) to reduce the overgrowth of limbs, reducing leg-length discrepancies. We are very grateful to all the patients who donated tissue samples from surgery - these samples allow us to do our research! Dr. Marjorie Lindhurst is one of the people who most patients never meet, but her hard work in our lab is vital to our mission. Recently, Dr. Lindhurst has been working to try to find a way to tell “Proteus” cells apart from “normal” cells. This is essential because we need to be sure that we are doing our research on cells that have Proteus syndrome, not normal cells. This “Proteus signature” will also allow us to make more accurate diagnosese and distinguish Proteus syndrome from other similar conditions. Some of Dr. Lindhurst’s

preliminary findings are shown below: The picture on the left shows cells from the cerebriform connective tissue nevus (CCTN) in a Proteus patient, while the picture on the right shows cells from a patch of normal skin from the same patient. You can see how the cells from the CCTN “light up” differently from the normal cells. Finally, we are very excited about a brand-new technology that the generous grant from the PSF has allowed us to use – whole exome sequencing. When we talk with parents about how we do not yet know which gene causes Proteus syndrome, many of you ask us: “Why can’t you look through all of the genes and find the cause that way?” We are now able to do exactly that, which is what “whole exome sequencing” means. Using this new technology, we will look through all the genes of several patients with Proteus syndrome (along with their parents’ genes) and we hope that this will help us find the cause of this condition. Each test costs about $2500 per person, so the PSF grant is a huge financial help – thank you!

Cells from normal tissue in the same patient Cells from affected tissue in a Proteus patient

6

My Experience living in my country Colombia these past ten months.

In April of 2009, In common agreement with my mom,while we were both in the United States we decided that I should go back to Colombia on May 25th to learn to how to value myself,even though this was very difficult decision for both of us because we were never separated.

It was a huge change in my life because I saw how the reality of my country really is, for example there's no consideration for a handicap person physically like me,not favored for jobs, there's no ramps on the sidewalks, there's no cars wheelchair accessible.

My mom whom stayed four months more, working in New York to save up some money to subsist here in Colombia, since here in my country they wont give my mom a job only because she is very old & here there's no opportunity only for young & healthy people. The four months that we were separated from New York she would send me money so I could pay someone to help me with the cleaning of my feet & to sell me the food, because unfortunately my brother whom is ten years older then me had no time to help me because his job & because he also has his own home, my sister even though we lived together in the same house she didn't had time either to help me because again she works & has

two beautiful small children.

So at the time I felt miserable because I had no one to back me up not even family, I spoke with my mom on the phone everyday but it wasn't the same to be here physically with me, It was a very hard time of my life, till Barbara King whom heard about my problems that I was having here in Colombia & helped me momentarily to pay a ma-am to clean my feet & sell me the three meals on the weekends. I thank God for the foundation whom helped me as always in that difficult time.

Every time I go to the doctors here in my country I have to tell them what Proteus is about & even the nurses hear about it.

On October 6th my mom finally arrived to Colombia satisfactory our encounter,my friend, my mom whom always has been with me, my angel whom understands me & whom is all for me was finally here,I was so happy to be with her again.

The past November I went to Bogota (Colombia's capital) to apply for a job who where offering to people who speak English, I did two of the exams & I passed, even today I haven't had their call well I think since I'm physically handicap I have no opportunity.

Unfortunately we had a bad experience because in the building where I had to do my second exam outside they are stairs & my mom was pushing my manual wheelchair (because my electric wheelchair I couldn't take on the car) unfortunately one of the wheels came off & before the look of more then two hundred people who were on the line to also take the exam,nobody absolutely offered to help us.

The biggest problem is my feet specially my right foot that since after may of 2008 I have this small ulcer that still hasn't healed up totally for some times it bleeds a lot, my right leg swells up,it gets red & when I go to

7

the doctor always give me antibiotics like in Southampton Hospital, New York & here in Colombia, we don't understand why? My mom always does the cleaning of my feet, (since I can't do it by myself since I can't bend my knees is very hard to do it by myself.)

Last December I was hospitalized in the town's hospital for twelve days because I had an inflammation of my right leg, whom again was very red & I had fevers,after two weeks after I developed bronchitis, & in January I had hemorrhoids & I had to have surgery

On the end of February I started to have pain on my wisdom tooth's, I had them both removed but I have my face like a ball. :) & a bit of pain but I hope this pain goes away fast.

One of my biggest wish is to obtain my surgery of amputate my left foot because it has caused me a lot of pain,even though the scare who does not leave me alone, I'm very scared, the desperation kicks in,I get very nervous, & many questions pop up like for example how I'm going to feel after the surgery, what happens next & if is the right decision. I get very sad because I can't wear normal shoes or the ones that I dream of wearing. But I also think is time to make that decision & if is the best for me.

I'm very happy to come back to the United States again, to see my friends, everybody from the foundation,I have the desire to comeback & spend a summer again since I haven't been on one since 2008.

I also have this huge desire to go to attend to a University over there in the United States,because I had a year & eight months without no school,probably that's how & why I get very sad with a huge depression.That's why I want to start school again since here in Colombia is a bit difficult to study because I have to present an exam that contains everything about my country, & well I haven't lived enough here in Colombia to learn everything about my country. Because I lived most of the time in the United States, over there well in my high school they don't teach you only the important things of Colombia. & I don't know much of the theme since when I went to the U.S. I was just a child, to make that exam is too many things to update.

I would love to live in the United States to continue my studies, & look for a possibility to work to live alone, because my mom is very tired of working & how she says "I don't see myself very old cleaning houses" & well I thank God for putting an angel in my life & for letting me be her son, I also want to thank my mom for everything for her struggle & for her been a fighter, to find out what I had,for taking me to unknown country(United States) at the time while we were unknown to everything about Proteus Syndrome.

I think is about time for me to continue with my studies & I know there's more possibilities over there & to the handicap people they would listen more & they are not discriminated...

I want to thank again Kim Hoag, Barbara King, Mary Timmerman & all who know the Proteus Family & had offered their help for my benefit. & friends who had helped me to continue going froward & how to handle this situation.

I thank God because I learn how to lived with Proteus whom only God knows why.

God bless you all...

Hian Jeffrey Mejia Ortega

8

Jordan's tough decision

Published Date: 19 May 2009 in the Bexhill Observer

He is at an age when most boys still dream of running on at Wembley to score the winning goal

for England.

Instead 14 year old Jordan Whitewood-Neal is faced with the grim reality of having his leg am-

putated because he is in so much pain.

Jordan, who has Proteus Syndrome, has been undergoing tests at the Royal National Orthopaedic

Hospital in Stanmore, Middlesex, since January.

He is waiting for the results before he finally makes up his mind but says he is "95 percent" sure

he will go ahead.

"I try to think of the advantage and not the disadvantage of having it done," he said this week.

"I just think of the good side of it."

The amputation would be the right leg just above the knee and Jordan hopes if it is done during

the summer holiday he won't miss too much schoolwork.

He was diagnosed with Proteus Syndrome when he was just two years old. It's a condition which

causes overgrowth of body tissue, which can mean skin or muscles, but with Jordan it is mostly bones - particularly legs, hands, spine,

ribs, and knees.

A pupil at Bexhill High school Jordan, of Watermill Close, has reached the point where his mobility is so affected that he barely walks

now except when he is at home and feels he might get on better with a prosthetic limb.

He commented: "I have thought of this a couple of times before. I have been thinking of it for a couple of years. I think it has got to the

point where it is time to do it now. I have said at other times maybe I can last one more year, or a few more months - but I don't think I

will last another year."

Jordan will soon find out if he is to be given the go-ahead by his consultants and the amputation will go ahead.

His mother Tracey commented: "It has taken a long time because Jordan has so many complications. He's had a CAT scan, MRI, blood

test, heart scan and so on, and the Conquest Hospital helps out by whatever tests they can do locally and sending the results up to Mid-

dlesex because it is such a long journey up there and back for us."

A bronchioscopy last year revealed indication of an obstruction in his throat and needed further investigation but now Jordan is waiting

for the consultants' verdict before making his own decision and being admitted for a couple of days to find out about the procedure,

where it will happen, and meet the team involved.

He commented: "I will probably ask my friends and people at school just to see what they think...but I know they will say its up to me.

"I am not really frightened of it. I have been assured by the doctors that it is not a dangerous operation. But I am a bit fed up with the

pain now.

"It's not really about walking - it is not to walk easier, but it would be a plus if after the operation I could walk. They said there was a

possibility I might not be able to use the prosthetic but anyway that's not the main reason I am doing it...It is the pain."

One of Jordan's family nicknames is Twiglet - called that because of his "knobbly" legs. To him-

self he occasionally refers to his legs and his stick as his "three Twigleteers" and admits he is

"slightly" nervous at the thought of losing one of them, but added: "It's like a tripod you use for a

camera. If one of those legs were broken it would be pointless. You can keep it, or just throw it

away because it's no good."

To support Jordan go to www.proteus-

syndrome.org.uk, and visit Jordanspages, or sponsor

Tracey's friends from Bexhill Runners who are this

weekend running the Luxembourge Marathon.

9

Ways to donate to the PSF

The Proteus Syndrome Foundation relies on the generosity and financial support of donors to ensure that we are able to

meet the goals in our Mission Statement.

The Proteus Syndrome Foundation is a not-for-profit organization under IRS tax law and donations are tax deductible to

the extent allowed by law.

We gratefully accept many types of donations, as outlined below. For more information on these donation programs

contact the PSF Treasurer Barbara King 901-756-9375 or [email protected]

Gifts of Cash A gift of cash is the most direct and immediate way to offer support. Please note that as a not-for-profit organization, all

gifts are tax deductible to the full extent allowed by law. Gifts can be made in honor or in memory of someone held

dear.

OR

go to the Proteus Syndrome Foundation web page at www.proteus-syndrome.org and click on Donate to make a

convenient on-line credit card donation .

Gifts of Stock A public stock gift can be very tax wise! Appreciated stock held long term (more than one year) can be given to the

Proteus Syndrome Foundation, thus allowing you, the donor, to avoid long-term capital gains tax. The full fair market

value of the stock is available to the Proteus Syndrome Foundation to support our mission. Not only do you avoid capital

gains tax, but you are also entitled to a charitable income tax deduction for the full fair market value!

Gifts Through Life Insurance Most people have life insurance coverage to meet the needs that we all can face. But life insurance is often overlooked as a way to

make a substantial gift for a relatively modest annual premium. A donor can name the Proteus Syndrome Foundation as the primary beneficiary of a life insurance policy. The donor

retains ownership of the policy, with access to the cash surrender value. At the donor’s death, the face value of the

policy will be included in the donor’s gross estate. However, if the decedent had directed that the Proteus Syndrome

Foundation receives the life insurance proceeds, the estate will incur a deduction from the gross estate. A donor can also

name the Proteus Syndrome Foundation as a secondary beneficiary to receive the proceeds should the primary

beneficiary predecease the owner. A donor may receive more immediate tax benefits for an irrevocable assignment of

proceeds or gift of a life insurance policy to the Proteus Syndrome Foundation. Upon the completion of the assignment

or gift, the donor is permitted an immediate federal income-tax deduction for the lesser of either the policy’s fair-marked

value, or the net premiums paid. In order to obtain an income-tax charitable deduction, the donor cannot retain any rights

of the policy. If the descendent had directed that the PSF receive the life insurance proceeds

Matching Gifts You may double, or even triple your gift to the Proteus Syndrome Foundation by having your employer match your

donation. Thousands of companies offer to match their employee’s charitable contributions. Some require forms to be

completed by the employee. Most companies have guidelines that the non-profit organization and employee must meet

before a donation can be matched. Your company’s Human Resources Department can give you more information about

your employer’s program, as well as the proper forms to complete.

Mail your Matching Gift Form along with your contribution to the Proteus Syndrome Foundation. We will complete and

return the form to your employer.

Disclaimer:

You should consult your tax advisor regarding how these tax issues

may impact your income or estate tax return.

10

Liefdevol aandenken aan

Sammy Lannoo Geboren in Oostende op 30 oktober 1990

en aldaar overleden in het AZ Sint-Jan,

campus Henri Serruys, op 15 februari 2010.

Lieve Jongen,

Heel onverwacht ben je ons voorafgegaan naar de Eeuwigheid.

Ondanks je beperkingen heb je steeds van veel wijsheid getuigd.

Je was een Zonnetje in huis.

Je charmante glimlach,

je bemiddeling als mama en papa eens woorden hadden,

je enthousiasme voor alle familieactiviteiten,

je simpele, maar meestal werkbare oplossingen voor problemen ...

Je getuigde van Kracht en Waardigheid.

Steeds was je erbij ...

Een karweitje, een pintje gaan drinken,

met de auto mee rijden, een stevige wandeling.

Je school en je leefgroep wilde je nooit missen.

Steeds heb je gevochten tegen een mindere gezondheid.

Je hield van Schone dingen:

een mooi hemdje, spelen met je auto’s,

een leuke film of muziek, lekker eten en drinken,

als het maar leuk was voor jou en de anderen!

Lieve jongen, Lieve Sammy, we zullen je missen.

Maar we weten dat je altijd een Lichtje zult zijn dat zal schijnen

in de harten dan diegenen die je gekend hebben!

Mama, papa, zus, broers, opa, tante en nonkel!

Het gaat je goed, heel Lieve Jongen!

Translated:

Dear Boy,

Quite unexpectedly, you preceded us into eternity.

Despite the limitations of much wisdom you have ever witnessed.

You were one up the stage.

Your winsome smile,

mediation as your mom and dad once had words,

your enthusiasm for all family activities,

you simple, but usually workable solutions to problems ...

You testified Strength and Dignity.

You were always there ...

A chore, a beer drinking,

with the vehicle driving, a good hike.

Your school and your leefgroep would never miss.

Have you ever fought against a lower.

You loved beautiful things:

a nice shirt, playing with your car,

a fun movie or music, good food and drink,

if only it was fun for you and others!

Dear boy, dear Sammy, we will miss you.

But we know you'll always be a light that will shine

in the hearts than those who have known you!

Mum, Dad, sister, brother, grandfather, aunt and uncle!

It's your right, very nice boy!

Juul and Houria Lannoo - Arab, his parents;

Selim Lannoo,

Naïma Lannoo,

Olivier Lannoo, his sister and brothers;

Willy and Julienne (†) Lannoo - Vandenbosch,

Amar (†) and Ouardia Arab - Hamzaoui, his grandparents;

Gisele and Luc Devos - Lannoo, his uncle and aunt;

The families Lannoo, Arab and related

Thank you for your words of comfort spoken.

11

LEND YOUR SUPPORT Proteus Syndrome Foundation, Inc.

I am interested in supporting Proteus Syndrome Foundation, Inc. Membership - $25 per family annually , (This will be excused if it is a hardship) Professionals - $35 annually, Donation: $______________________ Memorial: $____________In Honor Of:_____________________________________ Name:___________________________________________________________________ Address:__________________________________________________________________ City:_________________________________State________________Zip_______________ Phone:( )______________________Country____________________Email:_____________________ Family:________Health Professional__________ Friend:_____________Self:__________ Other:_______________________________________________

Please make check payable to: Proteus Syndrome Foundation, Inc. and mail to 8485 Dulwich, Cordova, Tenn. 38016. All donations received by PS, Inc. are tax-deductible and go to support ser-vices, educate professionals and families, and to fund research to find a cure for those affected by Proteus syndrome.

PROTEUS FAMILY GRANTS 2008 – 2009

The Proteus Syndrome Foundation is pleased that we have been able to help many of our

families with financial assistance in the following areas:

Medical equipment purchase and repair $700

Custom shoes $1,400

Clothes $70

Computer Equipment $1,200

Direct financial assistance (cash) $1,700

Transportation for 20008 PSF Conference $2,000

Accommodations for 2008 PSF Conference $900

2008 PSF Conference fees waived $1,000

2008 PSF Family conference costs $15,000

We are also in the process of assisting two families with physical therapy needs, to be reported

at a later date.

12

Proteus Syndrome Foundation

c/o Kim Hoag

4915 Dry Stone Dr.

Colorado Springs, Co. 80923

USA

I n an effort to improve the quality of life for our family and friends with Proteus syndrome, we welcome ideas from our readers and families on various

techniques of management and care, and general and educational suggestions that individuals have investigated and/or found beneficial. This exchange of

ideas is welcome. Parents and others have the opportunity to decide if they want to follow through with the suggestions. We do not, however, as an organization, support or endorse any particular treatment, therapy, or medication.

We encourage parents to support one another with suggestions and to contact their child’s physician for final approval.

Non-Profit Organization

US Postage

PAID

Colorado Springs CO

Permit NO. 184