Happy, Healthy and Prosperous? New Year

To be honest, I am happy the Holidays are over. Don't get me wrong, I love them, look forward to them, make big plans in my mind and absolutely love it when Jenny and Michelle are home. Then, it all feels right to some degree, although there is an absence that you can feel in every room of our home - Chris and Patrick. That emptiness will remain forever. During the holidays, it is as if the world stops and everyone is resting. It makes me antsy because I am very aware Duchenne takes no rest, it is with all of us, an elephant sitting in every room, present at every celebration. So, I'm always happy when things restart - this year in particular. I think we have come a long way with potentially promising clinical trials near the horizon. Night after night, I have listened to the bad news: the economy sinking, jobs lost, families suffering. It is frightening on so many levels. I was thinking we might all go to Congress asking for a bailout - a bailout of Duchenne. $100 million say, in basic research, looking for new /novel ideas, clinical trials, incentives for industry, exploring specific areas of care and CARE for all those families who are seeking the best for their son. I imagine the bailout won't work. But what will work and doesn't cost money is for all of us to inform this 111th Congress about Duchenne. We have many new members of Congress who have not even heard the word Duchenne, let alone understand how it hurts. The Members (most of them anyway) are sworn in ... time to call and call and call, find a friend in the office and talk to them about Duchenne. It is critical as we ensure Duchenne remains a high priority to NIH, to Congress, and to every other federal agency.

Warm regards,
Pat

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Comment by amerdutt purohit on February 12, 2009 at 2:09pm
a familiar name since i started looking for DMD on net
practicing urologist,trying to give some time to DMD project
meeting at banglore,India at the end of month
are you visiting the conferance? if yes please let me know.We in India are much behind in this disease management and support.May need your helpful suggestions
adeepee
Comment by Cheryl Markey on January 21, 2009 at 11:53pm
Hey, Pat it's Cheryl from Facebook......great being back on PPMD's site.....love the changes.......great job on your Happy Healthly Prosperous letter for 2009! I applaud you! Thanks for corresponding with me on Facebook! Maybe someday we will get a chance to meet !!!!

Cheryl

Staff
Comment by Pat Furlong on January 14, 2009 at 3:01pm
Hello Carrie,
You are exactly right about the urgent need to increase the overall NIH budget. This has been on our agenda for a very long time and we are anticipating a significant increase in NIH funding, but not public till late Jan. (roughly $1 billion increase in 2009 omnibus and maybe another $1 billion in the stimulus).
Warm regards,
Pat
Comment by carrie on January 13, 2009 at 11:23pm
Hi Pat,

There is a movement to ask congress to support additional NIH funding for medical research as part of the stimulus package. While these funds arent targeted specifically toward Duchenne, suporting NIH investment in general often leads to unanticipated Duchenne discovery (ie Losartin),enables the basic science that lays lays the groundwork for therapuetic discovery (anti-sense RNA targeting, gene therapy, stem cell) and also funds DMD directed science. Additional calls may make a difference. see blow...
.....and belated happy birthday.

Best regards, Carrie (Miceli)


Support NIH Funding in the Economic Stimulus Bill!
,

As the 111th Congress takes session, all eyes are focused on an economic stimulus bill expected to contain more than $700 billion in funding. Reps. Susan Davis (D-Calif.) and Brian Bilbray (R-Calif.) are circulating a so-called "Dear Colleague" letter, asking their fellow Congressmen to support the inclusion of additional funding for NIH in the stimulus package. The deadline for Congressmen to endorse the letter before it is released is 2 PM on this Wednesday, January 14th, and the full text of the letter is below.

Call your House Representative today to suggest that they sign onto this letter, and support funding for biomedical research in the eventual stimulus package!

If you have any questions on this information free to contact us at pfarnham@asbmb.org (Peter) or adodson@asbmb.org (Allen). Allen will be available by phone on Tuesday at (301) 634-7378 if you need help locating the contact information for your Representative. Thank you in advance for your help!
Peter Farnham,
Director of Public Affairs
Allen Dodson,
Science Policy Fellow
Full Text of the Dear Colleague Letter:
Dear colleague,

We invite you to join us in sending a letter to congressional leadership and to President-elect Obama supporting funding for biomedical research in the stimulus package. Not only will this funding lead to new progress in improving human health, it will create and sustain quality, high-paying jobs for Americans leading to long-term economic recovery.

In fact, each grant approved by the NIH goes to create or sustain seven jobs with salaries above $50,000, according to estimates. High-paying and high-skilled jobs will be necessary if we are to achieve long-term economic recovery.

Over the years, investment in the NIH has also led to numerous medical discoveries improving the health of Americans and saving lives. Funding to the NIH goes to prevent diseases as well as treat common and rare illnesses. NIH funding eases suffering and improves lives.

We believe the economic stimulus package under discussion gives us a historic opportunity to support biomedical research through the NIH. This funding will create and sustain high-paying jobs while improving the health and lives of Americans. Please contact Spencer Young or Gary Kline by 2 p.m. Wednesday January 14 to sign this letter.

Sincerely,

Susan A. Davis, Member of Congress
Brian P. Bilbray, Member of Congress

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