Interested in a cure for seizures? Here's where you can immediately help.

Feel free to share any of these posts. There are no copyrights on any of them, they are for anyone, anyplace, anytime for whatever reason. All of my love, from a man who just simply misses his son, and believes in the decency of people around the world,

Mike
**To reach the author of this blog Mike, the best email account is a silly one, but goes right to my phone. Technology is so cool. Its toiletoctopus@gmail.com. Thank you for reading this blog, and its been such a good project, in that it has helped others and me as well. May you all live life to the fullest, we have no idea when it shall be our last "dance."

With much love, I am proud of the Angelman Syndrome Foundation. If you can help them, and families with this condition, please consider donating to them at www.angelman.org. They are on Charity Navigator, and have done a phenomenal job over the years, on the awareness and research side.

Thursday, December 6, 2012

Tom Grooms, The Spectrum Show, and Cumulus Media


It was both an honor and privilege, to participate in a broadcast with Leigh Sutherland and Devar Burbage the other day, about Angelman Syndrome research on Tom Groom's show "The Spectrum." This show should be airing this weekend, at times still TBD, but even if one family gets information, then that is a battle won. Tom Grooms is one of the kindest men I've ever met. In this age of "move out of the lane," mentality, Tom stands out from this in stark contrast, as he has a golden heart. I greatly appreciate his compassion, and the fact that he gets back to a guy who uses an email account of toiletoctopus. Yet there's more than that, as he's been a strong supporter of Autism Speaks, and the autism community can greatly benefit from the work being funded by the Angelman Syndrome Foundation. Even those with epilepsy can, because a lot of the work on the UE83 proteins that might trigger seizures, and has been shown in people with autism, can one day get more answers and hopefully a cure.

The research at the University of North Carolina Chapel Hill, and other institutions is phenomenal. There they are creating mice with Angelman Syndrome, and using already FDA approved drugs to cure them of this condition. Now, that's not to say a cure is going to happen in 2013. Yet it is a established start, because a lot of medical discoveries, are started off in labs with rodents that I've become thankful for. Perhaps the next one in my house, will get an "official pardon." Seeing Leigh and Devar is always a joy, as they have fought for years, spending thousands of hours volunteering to help families out, and to find ways to generate awareness and fundraising for a cure. They've also been greatly supportive to our family, as while Tommy passed away due to an Angelman Syndrome seizure, they are people whom I trust very much so.

There are no words that I can type, that can convey how I thankful to both Tom Grooms, and Cumulus Media for allowing this opportunity. This holiday season has not been easy, as Tommy is on my mind and in my heart every single day. Yet for a few moments, going on air, it at least provides some hope. If just one family finds out their child has Angelman Syndrome, or if someone with scientific experience hears this and says "A ha!", that will be a beautiful moment indeed. WMAL 630 Woodbridge Washington, deserves a lot of credit for allowing such a show, that offers citizens an opportunity to bring much needed information to families around the D.C. Baltimore area, along with the rest of the country through podcasts and other technologies. Here is the information for the show:

http://www.mix1073fm.com/Article.asp?id=2308571

Thank you Tom, and one day may there be a cure for Angelman Syndrome, Autism, and Epilepsy.

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