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Summary of AVRF 2013 Conference

The 2013 AVRF Conference Recap and Thoughts of the Attendees

Karen Isabella and I, Karen, came from California to attend the conference for the second time.  As is was last year, the conference was an amazing experience for both of us.  Meeting other children with vitiligo has helped me, as a parent, better understand my daughters experience with vitiligo.  She is a beautiful girl who has always been comfortable in her own skin (with or without the spots!).  It never occured to me the she had been fielding stares and questions from her peers until she was able to articulate this to me after the  1st conference.  It made me realize that I had probably not given her enought support and tools around dealing with her peers.  I am so incredibly appreciative of AVRF and Stella and the message of acceptance and respect that it provides.  Isabella has made some wonderful friends (so have I) and I suspect that some of these friendships will last a lifetime.  My nephew, Alex, aslo has Vitiligo and came to ther conference (his 3rd year).  Alex is 15

From Elaine (grandma):  As a grandparent of two wonderful children (cousins) with vitiligo, it has been my joy to attend 3 AVRF conferences.   The first,was with my daughter Kelly and her son Alex, now 15.  The 2nd and 3rd were with my daughter Karen, her daughter Isabella, now 10, and Alex.  The best part for me was watching the children play and have fun with their peers with Vitiligo.  Stella has provided us all with this opportunity and I will be forever grateful for her love and support.

I am Isabella from California and I am 10 years old.  My favorite part of the AVRF conference is the whole thing.  I liked hanging out with my friends, hanging out at the hotel and going places.  I liked meeting other kids with vitiligo because they understand what it means and don't ask a lot of questions.

Andrea, LaGrange IL -  "Meeting new parents who share the same feelings and concerns that I do, really made me feel as if though I wasn't alone.  I really got a lot out of listening to the speakers and knowing that my daughter was out having fun with other kids like her made it such a special weekend - wish it could've been longer."
Andrea

Francesca, (10) LaGrange, IL -" It was nice to see other girls with vitiligo.  I can't wait for next year, I really want to come back again, it was a lot of fun!"

My daughter Makayla (age 9) and I attended this past August 2013 vitiligo conference and this was so eye opening and inspiring. Makayla seen no one that was different from her and that was a great feeling. She made lifelong friends bonded by Vitiligo.
Bobbie Lynn
Makayla 
Rhode Island

The conference was an awesome experience and a major step forward for me. This is the first time I actually got to meet and become friends with kids that have the same challenges. Thank you AVRF for this opportunity! Victoria

We are very pleased to be connected with an organization like AVRF that brings smiles and education all year round. We especially thank Stella for her unwavering commitment to the children with vitiligo!
Alphonso & April (parents of Victoria) PA

Hello Stella!!
Just want to thank you again for all you do for our kids!!  Ava had such a memorable experience that will last until we see you again next year!

Wishing you the Best
Colleen & Ava PA

Hi Stella... It's Staci, Kamden's mom. My husband Ken is so amazed by you and so happy that he came to be part of the conference this year with Kamden!  He has already said that we should make sure and attend each year. I will look forward to meeting you next year God willing. We hope to be of assistance to you in the future. We know you do a lot for this cause and I personally am very grateful!! 
Sincerely,
Staci GA

This was our first conference.  The speakers were excellent, especially Dr. Karin Schallreuter.  I learned more about vitiligo and what options we may have to treat it.  It was great to meet other parents and to hear their stories. I think we all learned a little from each other.  Stella did a super job organizing and making everyone feel comfortable and welcome.  My daughter spent the entire time making new friends - friends with vitiligo - it was a great weekend!  
Deb, Vermont  Emmy’s Mom

I really enjoyed the conference.  I was a little nervous because it was our first conference and I didn't know what to expect.  Everyone made me feel very comfortable. I liked meeting other kids with Vitiligo and hanging out with them. The speaker, Scott Jorgensen was amazing.  I can't wait to go back next year.  
Emmy, Vermont  age 13

UFC fighter Scott Jorgensen joins AVRF kids for 2013 Conference.
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Letter’s From Africa To AVRF

drkitili

3LetterDuncun

Alice Nairobi

Dear good people

I am humbled by the great work you have managed to accomplish. My husband has vitiligo. At first it destroyed men to see him loose his confidence and willingness to socialise. 

People in this country have very little knowledge of this disease. Sometimes I am in a very awkward situation since people think I burnt him with hot water.

I am mostly humbled when we meet someone on the street and he goes out of his way to talk and share the little information he has on the disease. Relief on the victims is so tangible. My greatest joy would be to see my husband learn everything there is about vitiligo so that he can totally empower other victims with knowledge.

Please lemie know when you have the next meeting on this. I would not mind him joining you.

Again thank u for the great work u are doing.

Regards

Alice
Nairobi: kenya

FRANCIS NGARUIYA NDUNGU

Stella,

Thanks for letting me know you arrived okay!

You may not know how I feel inside of me.I can only say it in words.l think you are great and you are the best person i have known.People are calling me after knowing that the Narrow band UVB machine is now working to thank me .But I am quick to tell them there a person known as Stella who is behind ail this.  I am elated.

Thank you for what you have done for Kenya. As we talked lets figure out how we will do more too help vitiligo victims like you and me.

FRANCIS NGARUIYA NDUNGU

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AVRF President Stella Pavlides

AVRF Goes to Nairobi Kenya
2005, 2007, 2009

Here in the United States, individuals with vitiligo live with pointing, staring, questions, ugly comments, and sometimes even bullying.  In Kenya, there is an even greater stigmatism associated with this disease.  There, vitiligo is viewed as AIDS, a curse, or cancer.  Many of our fellow brothers and sisters living with vitiligo are not accepted by society.  They are cast out and sometimes physically abused.  This is due to lack of education and awareness.

When I learned this, I decided I needed to go to Nairobi, Kenya to see firsthand what those living with vitiligo endure on a daily basis.   In 2005, I went to Africa for the first time.  Once there, I met Francis Ndungo who heads the Nairobi Chapter of the AVRF.  Francis invited quite a few people to join us for an informal get together at the Holiday Inn.  After a little while, the attendees began to relax and started to share stories about how difficult living with vitiligo in Kenya is for them. The AVRF was honored to be able to provide lunch for the attendees during this get-together. 

I went home to Clearwater, Florida and shared my Kenyan experience with the AVRF board of directors.  However, the Kenyan visit, talks with vitiligo patients, and a donated lunch didn't seem like enough.  I felt a yearning and obligation for the AVRF to do more for our new Kenyan friends.  As Francis and I continued to communicate, I learned that Kenyatta National Hospital did not have treatment equipment for vitiligo and would be the perfect place for us to donate a narrowband UVB unit.  This could be used to help patients treat their vitiligo. 

Through Francis, I was able to make contact with Dr. Peninah Kitili, who was at that time the head of dermatology at Kenyatta National Hospital.  We corresponded quite a bit, and she too informed me how much a narrowband unit would help.  I presented this idea to the board of directors.  The vote was unanimously in favor of gifting a UVB unit to the hospital.  

In the meantime in 2007, I returned to Kenya where I met with Dr. Kitili and her staff as well as with some of her vitiligo patients.  Words cannot express how much their need touched my heart.  Upon my return to the United States, we began mission in earnest.  The AVRF is a small, yet powerful charity and by the end of 2007 had raised enough money to purchase a narrowband UVB unit and have it shipped to the Kenyatta National Hospital in Nairobi. 

Later, in 2009, I returned to Kenya with Professor Karin U. Schallreuter, MD.  Dr. Schallreuter graciously educated hospital staff in the proper use of the narrowband UVB unit.  During our time there, we also distributed some "Build-A-Bear"® Teddy bears to the children in the cancer ward.  This was made possible through the “Paying it Forward” program of the AVRF.  Through this program, children of the AVRF donate gifts to other children who are less fortunate.  Words cannot express how excited the little children were about the bears.  It was very obvious that our gift was truly appreciated by each and every one of them. 

My dream is to return to Kenya to continue changing the lives of those living with vitiligo by educating the public.  I hope and believe someone who sees the worth of this mission will be able to help fund the trip.  I also look forward to getting additional help in creating an educational Public Service Announcement and informational vitiligo brochures produced in the Swahili language.  Please don't hesitate to contact me if you are able to help in any way. 

Following are some pictures from our time in Kenya.

Enjoy,
Macintosh HD:Users:avrf:Desktop:ALL AVRF INFO:my signature.jpg
Stella Pavlides
President

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Professor Schallreuter

Professor Karin U Schallreuter from the Institute for Pigmentary Disorders in association with EM Arndt University Greifswald/Germany and University of Bradford/UK and the President of the American Vitiligo Research Foundation (AVRF) Stella Pavlides went to Kenya

Vitiligo is characterized by the loss of an individual's inherited skin color. Sufferers are marked by de-pigmented, disfiguring white spots.  As one can imagine, this presents a striking and obvious skin condition in those with dark skin. Often, people with vitiligo are the targets of staring, questions, and bullying by others. In Kenya (and other areas of the world) affected individuals are often ostracized and are frequently characterized as cursed or bewitched. Because treatment in Kenya is difficult due to limited health funding, the AVRF donated a Narrow band UVB cabinet to the Kenyatta National Hospital in Nairobi.  This equipment will allow health professionals in Kenya to offer this treatment modality to all patients seeking help, regardless of their ability to pay.

In January, Professor Schallreuter went to Nairobi to explain this treatment modality in detail to her Kenyan colleagues. Both education and treatment are in demand in Kenya.  To that end, Professor Schallreuter also gave an extensive lecture on the subject of Vitiligo to members of staff and to local dermatologists. The Kenyan trip also included a visit to the children’s cancer ward, where the donation of 40 teddy bears - a generous gift from AVRF and “Build-a-Bear" - created a big surprise and lots of fun to the little patients!

If you wish to support awareness and education, please contact www.avrf.org
Any help is appreciated.