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The Orphan Drug Act and scleroderma were mentioned in a recent editorial published in the Wall Street Journal by Ed Rensi, CEO of McDonalds. Mr. Rensi explains how the Orphan Drug Act made it possible for companies to invest money in research for diseases that affect less than 200,000 americans, and how this legislation has made collaboration between for-profit and nonprofit organizations possible. Mr. Rensi gives the example of the Ronald McDonald homes. Link to the article is here. Here is an excerpt:
The Orphan Drug Act has made it easier for many nonprofit organizations to partner with companies to find treatments for rare diseases. That includes the Scleroderma Foundation, which is celebrating its 10th anniversary this year.
Scleroderma is a disease in which the body’s immune system attacks itself, causing the hardening of the skin, lungs and other organs. By funding research on the disease, the foundation is able to give clues to biotech and pharmaceutical companies on what avenues to pursue in developing treatments, or even a cure, for scleroderma. The foundation’s Research Grant Program has awarded more than $13.6 million, including more than $1 million in 2008 alone. Since the Scleroderma Foundation came into being, new insights have led to improved lives and – importantly – years of survival.
Companies such as Pfizer and Actelion have developed treatments that help to better manage the myriad symptoms and complications caused by diseases such as scleroderma and, thus, have made life better for countless numbers of people throughout the U.S. and the world.
One of the amazing people that I met this weekend at the Highland Park Scleroderma Foundation walk was Lisa Helfand, who found me through this blog. She told me that she was diagnosed with scleroderma 23 years ago and is married with two kids. She wrote with some tips for concealing her telangectasias.
The concealer that I use is by MAC- it is called “full coverage foundation“-this is the first layer I put on. Next, I use Studio Fix by MAC (second layer) and to finish it off, I use crushed powder by CLINIQUE. You can only get the full coverage foundation at MAC stores (not MAC counters).
You can also get the cosmetics that Lisa recommends on the internet. Despite her long-standing illness, Lisa seemed full of energy. She was very open about her struggles with scleroderma. I can vouch for her cosmetic suggestions– I thought she looked great and I couldn’t see her telangectasias at all.
Rep Tierney (D-MA) introduced H. Res 1232 on May 22, 2008 supporting the idea of a National Scleroderma Month. The Scleroderma Foundation’s advocacy committee has been working to secure more co-sponsors for this legislation, and you can help this effort. With 50 co-sponsors, the bill does not need to go to committee and can be passed more quickly, and there are currently 20 co-sponsors.
You can figure out who your congressperson is, and how to contact them, by clicking here and entering your state and zip code. You will be given a contact phone number. All you have to do then is call that number and ask to speak to the Health Affairs Legislative Aide and tell them you would like to request your congressperson become a co-sponsor of H. Res 1232. Leave a message with contact information if you can’t get through.
Become an Scleroderma Foundation advocate today by clicking here and filling out the online form. You will receive “action alerts” periodically prompting you to contact your legislators about specific issues of importance to the scleroderma community.
The bill currently has 20 co-sponsors, and I’m proud to say both of the legislators that I contacted (Bobby Rush and Danny Davis, from Illinois) signed on. Here is the complete list so far:
Rep. Tammy Baldwin [D-WI]
Del. Madeleine Bordallo [D-GU]
Rep. Lois Capps [D-CA]
Rep. Michael Capuano [D-MA]
Rep. Steve Cohen [D-TN]
Rep. Danny Davis [D-IL]
Rep. Maurice Hinchey [D-NY]
Rep. William Jefferson [D-LA]
Rep. Patrick Kennedy [D-RI]
Rep. Dennis Kucinich [D-OH]
Rep. John Lewis [D-GA]
Rep. Edward Markey [D-MA]
Rep. James McGovern [D-MA]
Rep. Gregory Meeks [D-NY]
Rep. Bobby Rush [D-IL]
Rep. Linda Sánchez [D-CA]
Rep. Janice Schakowsky [D-IL]
Rep. Robert Scott [D-VA]
Rep. Christopher Shays [R-CT]
Rep. Christopher Smith [R-NJ]
If your representative is not on the list, please make a phone call today! You’ll be surprised how easy it is to make a difference.
The Greater Chicago Chapter of The Scleroderma Foundation is having their annual walk in Highland Park this Sunday, June 22. Registration begins at 7:30, and the walk begins at 9am. You can walk either 1 or 3 miles. It is a great opportunity to meet lots of nice people who have the disease or s
More information about the walk, and directions, are here.
Register online here.
Donate to my walk here.
A woman with scleroderma named Karen Sipe contacted me through this blog and we have been corresponding by email. I have permission to excerpt some of her story for you.
My husband and I own a small web based business and merged it with a manufacturing business my grandfather started, which my dad turned over to me in 2000. I am 37 and was diagnosed at 23 [with scleroderma], after moving from San Diego to Wisconsin to go to nursing school with my boyfriend at the time after getting out of the Navy and getting my EMT-1 certification. I had to change my major to psychology. My Raynaud’s was out of control and I could not keep up with the schedule of upcoming clinical rotation. I ended up being hospitalized and lost part of my thumb. I did learn how to take precautions with the cold, but I was also in great denial and did not take better care of myself.
I was diagnosed with Sarcoidosis in May of 2007. I was exposed to quite a bit while in the Navy. They had just started allowing women on ships and another girl and I had to earn our safety gear by showing we could work just as hard as the males in our division. I don’t know if she developed any problems…. My son was born in 2004, 2 months premature. I developed HELLP Syndrome and lucked out by being referred to an excellent hospital in San Diego where 32 weeks was considered full-term. My son attends daycare full time and is doing well. He tries to straighten my fingers for me and I think it is really cute how he is trying to understand what is going on with mommy.
I have a history of many experiences basically fighting for care from the VA in the late 1990’s and recently as well as mainstream medical care. I feel that some of my past and present medical problems, such as frequent digital ulcerations and limited range of motion, could not have been completely avoided, but maybe the frequency could have been lessened had I learned to advocate for myself earlier. There are two things I am working on, the first is to relay experiences briefly. I have a tendancy to be wordy. My goal is to share what I have learned without dispensing advise. Most of all, I would like to raise awareness.
The themes of education of medical personnel and the need to increase awareness in general are recurrent themes in my discussions with people who have scleroderma. Karen has a website on myspace: http://www.myspace.com/reloc.cfm?c=2&id=b3b78501-12d9-4021-860d-422331509202
You need to become a member of myspace in order to visit her site, but she is also working on a blog not related to myspace that I hope she will share with us in the future.
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