Melissa, her mom and caretaker were thrilled to have the opportunity to attend this years, ulf.org conference. Pictured are Dr Tanya Brown specialising in neuropsychology, Dr Marjo van der Knapp,professor of pediatric neurology at VU University Amsterdam and the VU University Medical Center, Dr Orna Elroy-Stein, Flora, holding Snowball’s Great Adventure. She is one of many parents at this conference. She son has VWM. Also,Dr. Orna Elroy-Stein is a Full professor at the Department of Cell Research and Immunology at the Faculty of Life Sciences, Tel Aviv University.
The conference was rich with informations. Parents left with some hope that the research is moving forward. There were some great connections formed.
The Leukodystrophy community is small. There are little more than 200 cases currently worldwide.
Underfunded, this obscure rare disease need attention and funding.
Please take a moment and visit ulf.org to learn more about Vanishing White Matter Disease.