I'm the founder of ResearchCrossroads & Innolyst and we've helped PPMD develop the DuchenneConnect website. It's been very exciting, and a learning experience to understand the issues involved in genetic testing and registries for clinical trials.
I'm so thankful to have met Pat and the PPMD extended family, you help me count my blessings every day!
About my family:
Jan, my wife
Trevor, my son (11 years old)
Lucy, my doggy
San Mateo, CA
Comment Wall (7 comments)
You need to be a member of PPMD Community to add comments!
I hope all is well. I do think about you and the work you are doing to help our community. It is much appreciated. I had to use the San Mateo bridge a couple of weeks ago, and it brought back memories of driving to SF state and the bay area and friends I have in the area.
Kyle, I am going to be bold here. I have asked friends who live in the San Mateo to call their house member to get support for HR 5265. It is the MD Care re-authorization act. I believe Jackie Speiers is the newly elected House member. She took Tom Lantos place. I believe if her office hears from enough of her constituents we can get her support. I am sure you are familiar with her history. I would be surprised if we could not get her support. I am asking if you could call the local office and request her support for this important bill. Kyle we can raise all the money we want privately but the money and support we get from congress can help move things quicker to give our children a standard of care and advance getting the research from the lab to clinical trial. Our children have no time to wait.
Here is the link to get more information and send an e-mail.
It is so important to follow up with a phone call to DC or the local office. I don't know if Ms. Speiers is going to support H.R.5265 already but another call will only help. If she is not your House member, call who is your House member.
We are hoping to get the support we need to get this bill passed soon. The original bill was established in 2001 and expired in 2006. You can go to the Discussion Forum and read under Advocacy more information. I know I obsess over this but it is the one thing I can do to help make a change if not for my son for all the other families. I think as a parent you can understand.
You can talk to Ryan and Pat about it.
I know I am being bold to ask but I would rather ask then let an opportunity slip by and not ask.
I appreciate your consideration and wish you and your family well.
Thank you again for the work you have already done.
I am the mother of a 16 year old with duchenne muscular dystrophy. My family has no family history of muscular dystrophy prior to my 16 year old. I have an older son and daughter.
I count my blessings for people like you who care enough to get involved and help. Keep up the great work! You are helping to be a part of the history that will change our children's lives for the better.
I wish you and your family all the best!
I spent a few years crossing the San Mateo Bridge to go to San Francisco State University