BENEFITING: Charities Aid Foundation America
We are asking for your support! Please help us fund research projects in order to find a drug that can reverse the effects of intellectual disability and specifically, Kleefstra syndrome (“Kleefstra” or “KS”).
Many of you may not know that our seven year old son, Parker has Kleefstra, a rare genetic disorder that causes both intellectual and physical disabilities; speech impairments and various other neurological/mental and physical abnormalities (including heart defects, kidney/urological defects, respiratory infections and possibly seizures). There are no known cases of KS kids or adults living independently – all require lifelong care and cannot function in simple tasks we often take for granted.
Parker has low muscle tone that affects his gross and fine motor abilities throughout his entire body. He now can walk without a walker but often becomes very tired due to his low muscle tone and frequently uses a wheelchair. He has had early intervention therapies, occupational therapy, physical therapy, speech therapy and will continue to have therapy throughout his life. He is currently nonverbal, but we are hopeful that communication will happen, if not through speech, then through computer technology. As a family, we celebrate even the smallest of his milestones and blessings. We do not yet know what the future holds for Parker, but we are convinced that we must do our part to help him and all children living with KS and other intellectual disabilities, enhance their ability to understand, speak, and communicate so that they may reach new milestones. Ultimately, together we can help them live fuller, richer lives.
GeneSpark.org is an international non-profit foundation, started by parents of other KS kids, with a purpose to fund scientific research projects aimed at reversing intellectual disability, with an initial focus on KS. We learned from our conference in Boston this past June, that GeneSpark has put together a Scientific Advisory Board from M.I.T., Harvard, Stanford, and Johns Hopkins to help guide our research efforts; almost all of them were at our conference! (Go to genespark.org to read more indepth information about the advisory board, the research companies that are focusing on KS and more information on KS.)
Progress has in fact been made with regards to understanding KS, but no one is yet focused on developing a drug treatment, primarily due to a lack of available funding.
Funding is the biggest hurdle to progress but the latest research and exciting recent developments in drug testing show that you can help make a difference in our lifetimes if we get going NOW. YOUR contribution can *spark* change to help children affected by KS to one day possibly speak, learn, understand, and communicate like typical children. We thank you in advance for any help for finding a cure.
If you are interested in writing a check. Please contact me at firstname.lastname@example.org and I can send you the information.
Mike and Jennifer Owens