Unfortunately, many families are being misguided by information on the current patients diagnosed with a VAMP2 gene mutation. We are approaching 40 cases worldwide.
“To hear there is another child with Jack’s variant – I’m verklempt. I have so many questions and have been longing for a message like this. I am so impressed with how much work Alex has done and how much passion she has for this genetic mutation that affects all of our children. There will be a day I hope to be her other hand. I’m fully vested but not capable of
helping right now. Until then Alex, keep doing all the amazing things you’re doing for our children and those who are born in the future with the same genetic makeup”.
-Heather Steiger, Jack’s mom
“To be able to connect with families around the world experiencing the same challenges as we are, is invaluable. We are able to give each other emotional support and share the ups and downs of life with VAMP2. The VAMP2 Facebook page and Alex’s website are vital if we are to find treatments and a cure for VAMP2. The power of communication and sharing of information is the key to helping our children live their best possible lives. To achieve the best results for VAMP2 patients, we need professionals from around the world working together collaboratively with families. This will give our children the best chance for a bright future”.
-Cheralee Kemp, Will’s mom.
"Take good care of yourself. Rest. We need you so much and we appreciate all your energy. You are amazing".
-Nati, Jon's mom.
"Thank you for everything you are doing for our children".
-Katia, Asia's mom.
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