Through this website, I was lucky enough to not only be contacted by the micro-biologist who wrote the first Case Study on this Syndrome - I have also been able to find two other families with young boys who are also living with UBE2A Deficiency Syndrome. One child lives in the UK and his mother and I are in regular contact via e-mail. The other boy - about 2 years younger than Abram lives in California and just 5 hours from where this Summit is going to take place!
His family will be attending the summit as well and we would all very much like to meet, have our boys meet one another and be able to meet the only other family in the country with a child living with UBE2A Deficiency Syndrome. It would mean the world to me to be able to attend the conferences at the Global Genes Rare Advocacy Patient Summit so I can learn how to better advocate for Abe but to have the opportunity to meet Abram's UBE2A "brother" would be life changing.
Please take a look at our fundraiser and if you can, please spare a few bucks to help us get there. It means more than I can even explain in words. Thank you.