Saturday, December 4, 2010
Saturday, October 16, 2010
Below is a copy of the letter Congressman Delahunt sent me. Above the letter is a link to a short biography of his life and work. In the letter, you will see that Congressman Delahunt is an advocate for people and families with Fragile X. Everyone who reads this should say thank you to Congressman Delhunt for his work in bringing awareness to Fragile X.
From: Congressman Bill Delahunt
Sent: Thursday, September 30, 2010
Subject: A Remarkable Family
Dear Chaconas Family:
It gave me great pleasure to meet your dear friend Ed Hanrahan yesterday and speak with him about Fragile X Syndrome. During our meeting he presented me with a binder of pictures of your family and directed me to the blog that Alex created. I visited the "Hokey Pokey" blog and was inspired by all that Alex and Adam have achieved. I believe they are both on a path towards greatness.
I first came to Fragile X over 13 years ago, as a freshman Member of Congress and I had the privilege of working with Congressman Wes Watkins (OK), who like me, knew people with children afflicted with Fragile X and saw that the issue had not penetrated the consciousness of too many Americans. Because of families like yours, I have championed funding for research into Fragile X Syndrome. My good friends and colleagues Representatives Gregg Harper and Phil Hare have joined me in chairing the Congressional Caucus on Fragile X. The caucus successfully has fought for increased funding for Fragile X research at the National Institutes of Health and the Department of Defense, organized the first Congressional briefing on Fragile X Syndrome, and released a public service announcement to raise awareness about the disease.
If gives me great honor that my work has allowed me to meet remarkable families such as yours. I look forward to continuing me efforts of raising Fragile X awareness and will keep on following the "Hokey Pokey" blog.
Again, I am glad to have been made aware by your story and look forward to staying in touch.
Member of Congress
Saturday, October 2, 2010
Saturday, August 21, 2010
Wednesday, August 4, 2010
This is a short video of my volunteering at Second Strides. Second Strides is a nonprofit organization that rescues race horses. Jason and I volunteer their every Saturday for an hour or so. I really like the people there and working with the horses. If you like the video, please let me know by leaving a comment.