Three years ago, we started raising money for the Down Syndrome Research and Treatment Foundation (DSRTF), but you already know that because you have been there supporting us, both financially and emotionally! Together we have already raised over $10,000.
Many of you just donated to DSRTF back in March in recognition of World Down Syndrome Day, so don't worry we're not hitting you up again :) We did want to share some exciting news though. Your donations are making a difference!
The research, which is mainly funded by private donations like yours, has led to a clinical trial. Roche labs has developed a drug which may improve brain function in individuals with Down syndrome. Testing the safety and tolerability of this drug is the first step in developing a viable treatment.
Even a small boost in cognition could make a huge difference to an individual with Down syndrome. That is what we want for John, a safe boost. Maybe a boost that will make him more independent and more able to do what he wants to do.
Speaking of John, he is doing very well. He is happy and healthy, which is of course the first thing you want your kids to be. He is going to school 4 days a week. He is talking more and more each day. Although a man of few words (as compared to his sisters), he has no problem letting us know what he wants. Usually that is to play with the iPad, watch a show, go outside on the swings, see his sisters, or have a cookie, ice cream or pizza. He knows his alphabet, his colors, shapes, and numbers from 1-10, and can even read some sight.
He continues to brighten each day with his smiles, his sweetness and sense of humor, and his pure way of enjoying life. He enjoys things to the fullest. Just listening to music isn't enough for him. He repeatedly tells us that we also need to dance. So if you should happen to pass our car, and we are all dancing in our seats, you'll know who is behind it.
October is Down Syndrome Awareness month. We are, once again, raising money for the annual Romp for Research which is being held on Manhattan's Asphalt Green on October 2 at 2:30. Since it's inception in 2006, The Romp has raised over 1 million dollars for DSRTF. Not bad for an event, started and implemented by a group of parents just doing what they can to help their kids reach their full potential.
If you would like to make a donation to our team you can do so through this site or by sending a check to our home (you can email at firstname.lastname@example.org if you need our address.) Given your overwhelming past generosity and these tough economic times, we considered not fundraising this year. We changed our mind though because we truly believe that every little bit helps.
Thanks again for all of your support on this amazing, eye opening, and yes, at times scary, adventure.
Bill, Christine, Katherine, Julia and John (the Jubster)