Help Save Important NIH Research Funding for Scleroderma

Scleroderma Foundation eLetter

eLetter #394

Greetings!

ACTION ALERT: Tell Your Congressional Leaders to Support NIH Funding for Important Research

Leaders in Congress are working to finalize the fiscal year 2011 appropriations bills by the end of next week. Federal departments and agencies are currently operating under a continuing resolution until Friday, April 8. Many important health care programs face potential cuts in the final FY11 appropriations legislation, including the National Institutes of Health.

ACTION REQUESTED

NOW is the time to contact your representative and two senators and ask them to:

Protect the National Institutes of Health by funding the agency at an amount no less than the current level of $31 billion.
Examine the entire federal budget when considering cuts - not just discretionary programs.
Keep you informed regarding their actions and their votes.

Please contact your senators and representative by Tuesday, April 5.

Calling works best. However, you also may e-mail your representative or senators. You can find the information for your leaders at www.congress.org by entering your ZIP code in the box on the right-hand side of the page.

TIPS FOR CALLING CONGRESSIONAL LEADERS

Be prepared to leave a brief (60 to 90 second) message explaining that you are calling to ask your representative or senator to protect NIH funding, examine the entire federal budget and keep you informed about their actions and votes.

Identify yourself as a constituent and a member of the Scleroderma Foundation. Ask to speak with the representative's health care legislative assistant.
When connected to the health aide (or his/her voicemail), explain that hope for a better future for patients and families living with scleroderma lies in biomedical research support by the NIH.
Give the aide your contact information and ask to be kept informed of the representative's action on this important issue.

If you have any questions, please contact the

Scleroderma Foundation at (800) 722-HOPE (4673) or visit our Advocacy page.

Living with Pulmonary Hypertension

Pulmonary hypertension (PAH) is a life-changing illness. Although lifestyle changes may be necessary, many patients continue to lead fulfilling lives. This is important to keep in mind. A person with pulmonary hypertension may adjust their lifestyles to better cope with the disease.

PAH can be unpredictable, and preparing for the unexpected can make a big difference in quality of life.

Save the Date: Scleroderma & PAH Teleseminar on April 6

The Southern California Chapter of the Scleroderma Foundation is hosting a teleseminar on scleroderma and pulmonary arterial hypertension (PAH) at 11 a.m. (PST) Wednesday, April 6.

The speaker is Darlene Martin, R.N., M.S.N., N.P., Clinical Advocacy Manager, at Actelion Pharmaceuticals. She will present "Scleroderma and PAH: What We Know Today."

To access the teleseminar,call (877) 216-1555. Enter the passcode: 981555.

For more information, contact the Southern California Chapter at (877) 443-5755.

FDA Intends to Remove Unapproved Drugs

The U.S. Food and Drug Administration (FDA) recently announced that it intends to remove certain unapproved prescription medicines intended to relieve cough, cold and allergy symptoms from the U.S. market.

These products have not been evaluated by the FDA to assure that they are safe, effective and of good quality. These products may therefore pose unnecessary risk to consumers, especially when there are other products available for treatment of cough, cold and allergy symptoms, including FDA-approved prescription drugs or over-the-counter drugs that follow appropriate FDA standards.

Read the rest of this consumer update from the FDA.

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