Monday, September 19, 2011

Politics

“Politics is supposed to be the second oldest profession. I have come to realize that it bears a very close resemblance to the first.” - Ronald Reagan
I had the honor of visiting Washington, D.C., this past week on behalf of the Scleroderma Foundation. The work we do locally to provide support and education to those with scleroderma is vital. Our local fundraisers provide "seed" money for researchers, who can do early studies on a good idea, but we cannot raise the kind of funds we need to do big clinical trials. That money, in general, comes from the NIH (National Institutes of Health).
The NIH is a large organization, but the research money is allocated across the nation. Much of the "bench" research in the United States is funded with NIH dollars, as is a great deal of clinical research.
As you are no doubt aware, scleroderma research does receive some funding from the NIH. Our goal in visiting Washington, D.C., was really two-fold. First, we tried to impress upon our representatives the importance of NIH funding. We talked about high tech jobs, advancement of science, and the health of our citizens. Second, we are hoping that some of the Congressional leaders with whom we spoke will join us on a bill, the "Scleroderma Research and Awareness Act." This bill, which asks for no additional funding, does ask that the NIH fund scleroderma research and that the CDC (Centers for Disease Control) promote awareness of scleroderma. The ultimate goal is that those affected will be diagnosed more quickly (because their doctors recognize the disease) and will have treatments available (because the research has been done). Ideally, when the cause is eventually known, the disease may even be preventable or curable.
So, we spent an exhausting couple of days marching through the House and Senate buildings, discussing our message and our "ask." It was very interesting to see the back side of politics, where the deals are made and the decisions are influenced. I came to realize that the saying "the halls of power" is quite accurate--many of our meeting took place in hallways, as staff members have limited space available to them (the buildings are gorgeous but staffs have grown substantially since they were built).
One of the unexpected highlights of my trip was meeting with the Senior Policy Advisor to Congressman Brian Bilbray, Gary Kline. (photo above) From our leadership within the Foundation, I learned that Congressman Bilbray is a huge supporter of the NIH--he has an incredible reputation on the "hill" for his emphasis on funding of the NIH. In addition, Gary felt that the Congressman would be interested in supporting the bill. So, I'm holding my breath (maybe not, lungs won't tolerate that) and hoping that he was right. Regardless, it felt great to think that my trip was worthwhile and quite heartwarming to know that my own Congressman was such a great supporter of medical research.
OK, next blog will review the results of my one year follow-up in Chicago. But, wanted to share this rather more exciting information first! :)
ADDENDUM: Congressman Bilbray is, indeed, co-sponsoring the Scleroderma Research and Awareness Act. Thank you, Congressman!

13 comments:

  1. Go, Holly! Well done. I can't think of a better representative or advocate than you. lisa sturt

    ReplyDelete
  2. Agree, you're the best. Es

    ReplyDelete
  3. And I am thrilled (and surprised) to hear that Congressman Bilbray is on the right side of this issue!!

    ReplyDelete
  4. Ps.... Wow do you look like Jake in this picture!!! Gorgeous....

    ReplyDelete
  5. Hi Holly, thank you for being such a great encouragement. Do you still practice medicine and is it possible to contact you via email? I'm seeking to connect with other physicians with scleroderma.

    ReplyDelete
  6. Have you stopped writing? Let us hear from you.

    ReplyDelete
  7. That is very fascinating, You are an excessively professional blogger.
    I have joined your feed and stay up for in search of more of your magnificent post.
    Also, I've shared your web site in my social networks
    Take a look at my page : porn tube

    ReplyDelete
  8. Hey I know this is off topic but I was wondering if you
    knew of any widgets I could add to my blog that automatically tweet my newest twitter updates.
    I've been looking for a plug-in like this for quite some time and was hoping maybe you would have some experience with something like this. Please let me know if you run into anything. I truly enjoy reading your blog and I look forward to your new updates.
    Also see my web site - www.partygalleries.com

    ReplyDelete
  9. Hi just wanted to give you a quick heads up and let you know a few of the images aren't loading properly. I'm
    not sure why but I think its a linking issue.
    I've tried it in two different web browsers and both show the same outcome.
    my webpage: electronic cigarette wholesale

    ReplyDelete
  10. Numerous medicines can help control symptoms and prevent complications such as medicine to dilate the blood vessels, reduce stomach acid, suppress your immune system, relieve pain and prevent infections. Few therapies can also help you improve mobility and strength and manage pain. Few surgical options such as amputation, lung transplant can also help, however medicines may have possible side effects that may trigger other parts of your body. Surgeries are painful and will cost you great with no guaranteed cure.Dermeton, a product by Herbs Solutions By Nature is the best answer for all the worries of this disease, it has treated numerous patients successfully with not even a single history of reported side effects. Prepared by natural ingredients, it is way affordable than any other treatment of scleroderma !

    ReplyDelete
  11. Unfortunately there are a lot of AIDS/Herpes denials on Herbal cures still out there. I did research on them after I was tested HIV/Herpes positive I was so worried am I going to die soon. I continue my search again on herbal remedy for Std, then I found lots of testimony on how Dr Itua Herbal Medicine Cured HIV/Aids, Herpes Virus,Copd, Hepatitis, Diabetes, On websites sharing their testimonies, which made much more sense to me. All the authors pronounce Dr Itua As a man with Good Heart, I pick interest in their testimonies and I contact him about my situation then he gave me procedure how it works, I proceed after one week he courier his Herbal Medicine to me and instruct me on how to drink it for two weeks to cure. I receive His Herbal Medicine so I drank it for two weeks as I was told then after 2 days I go for a test I found out I was cured from HIV/Aids & Herpes Virus, I pay homage to him 2 months ago to his country to celebrate with him on his African festival which he told me it usually happens every year. I know there are lots of (HIV)/Aids&Herpes Virus denials of Herbal Remedy movement the same few doctors and they represent a very small faction of the community. I could have died because I refused Natural Herbs Cures for so long, but luckily, by the grace of God I am alive to tell my story. Contact Info...Whatsapp Number...+2348149277967,Email...drituaherbalcenter@gmail.com/My Instagram Username...avat5634 Just in case you need someone to talk with.

    ReplyDelete
  12. My little princess is so beautiful) I underwent using Dr Itua Herbal Medicine. I had a miscarriage 7 years ago. I still can’t hold back my tears when I remember that horrible period of my life. After my loss I couldn’t get back to life for a long time. I’m glad I have my husband. He gave me support I needed the most. Together we can do everything! We wanted to have kids for a really long time. We’ve gone through a lot, but if you want something badly, you’ll get it! I had to search online on how i can use herbal remedy due to my infertility then i came across Dr Itua how he cure all kind diseases and helped a lady from Kansas City to get pregnant so i contacted him on email,He gave me some guidelines to follow he also send me his herbal medicine via courier service which he instruct me on how to drink it for two weeks really i did and after 7 days of having intercourse with my husband few days later i noticed my period didn't come then i decided to go for check up i was pregnant with a baby,Dr Itua is a genuine miracle man..I've got pregnant from first attempt. We were over the moon! Our girls were born in May 2015. We've just celebrated their first birthday. Finally joy and peace came to our family.Here his Email/Whatsapp Number...+2348149277967/  drituaherbalcenter@gmail.com He cure the following...infertility Liver/kidney Inflammatory,Diabetes,Herpes Virus, Lupus, HPV, Cancer, Hiv/Aids, Hepatitis, Als, MS, Menstrual Cramp,  Fibroid.

    ReplyDelete