I am putting the text of his most recent post here, but please visit his blog and read more about his fight at Stop Seizures Now. Here is the text of his blog post titled Foundation for Angelman Syndrome Therapeutics: FAST-Colin Farrell's in the House.
There are so many people in the Angelman Syndrome family, that are hoping for a cure, to this condition that is caused by a deletion of chromosome 15. While angels are a joy to live with, due to their magnetic, happy personalities, infectious smiles, and laughter, it would benefit them and their loved ones when that medical breakthrough is discoverd. Notice the "when" and not the "if," because that is for a reason, as the work of Dr. Edwin Weeber and others, with animal projects have proven that Angelman Syndrome can be created and cured at the genetic level. Ten years ago, "if" would have been appropriate, as some of the most intensive research has taken place in the past couple, due to the dedication of doctors and groups like FAST. For those of you whom are not familiar with FAST, it stands for Foundation for Angelman Syndrome Therapeutics. Based out of Illinois, and run by an all volunteer staff that are all parents to a boy or girl with Angelman Syndrome, they've got the passion and the decency to never give up.
It is too late for my son Tommy, who sadly passed away from a seizure related to Angelman Syndrome in 2009. This is the same story for other parents of Angels, who miss their little ones, more than mere words on a blog could express. Yet there are thousands of parents and family members across this globe, which is becoming smaller everyday, that hold out the hope for a cure for Angelman Syndrome, which causes major developmental delays, such as those related to mobility and speech. FAST offers a chance for these parents, as the organization is broken down into a Board of Directors and Scientific Advisory Board. This unique partnership, along with its volunteers, makes it an "effective machine," for new possibilities, including the cure that's around the corner if the necessary funding can be discovered. When you think about the cost versus what it would mean to parents and children everywhere, it is a "drop in the hat," and I cannot stress enough the importance of donating to FAST whatever you can.
Funding goes to help discover new treatments for the cure of Angelman Syndrome, along with helping angels get better medical care. That is the proverbial "win win", and the passion that FAST has cannot be denied. Parents of angels are running races, generating community events, all to help out this efficient organization. Even Colin Farrell, whose son has Angelman Syndrome, has chosen to work with FAST because of this level of dedication. For more information, go to their internet address athttp://www.cureangelman.org/. There you will see a group that is committed to a cure, and you can reach them at 1-866-783-0078. Look at their site, and I am sure that you will be impressed by their endeavor, because a cure for Angelman Syndrome is a reality.
Please visit and donate!
Also, if you want to help Mike in his fight for seizures and his work with the Vanderbilt University's Kennedy Center Angelman Syndrome Program, you can purchase a SUCK FEIZURES, Tommy Collection shirt , and $4 from the sale of every shirt will go to Vanderbilt's program.
Love one another~Yvonne