Scleroderma Foundation

In This Issue

2009 SF Capitol Hill Visit A Great Success

Office of Research on Women's Health

Tips to Fight Osteporosis

Information on Flaxseed and Flaxseed Oil

Talking to Your Doctor

Flu Myths and Realities

Find a Flu Shot Near You

Scleroderma Student Essay Contest

Upcoming Events

Stepping Out Walks

Advocacy Update

PHOTO OF THE WEEK

Paula May (Illinois), Robert Riggs (National CEO), Judy Nichols (Michigan), Laura Dyas (Exec. Dir. Michigan), Kris Klobucar(Wisconsin), and Darren Webb (SF Washingtom DC Consultant) visit Capitol Hill.
Paula May (Illinois), Robert Riggs (National CEO), Judy Nichols (Michigan), Laura Dyas (Exec. Dir. Michigan), Kris Klobucar(Wisconsin), and Darren Webb (SF Washington DC Consultant) meet with lawmakers on Capitol Hill.

Scleroderma Student Essay Contest

Choosing scleroderma as a research topic helps to not only spread the word about the disease, but also helps to inform others about how they too can join the fight against scleroderma. You can win a Wii system or even a trip to Boston!

Stepping Out to Cure Scleroderma Walks – There Are More Left!

Find a walk near you!

Scleroderma Legislation

Learn more about these bills.

S. 1545

H.R. 2408

Pfizer, Inc. Logo

2009 Communications Sponsor

Scleroderma Foundation eLetter

Friday, October 16, 2009– Issue #318

eLetter Archive

2009 SF Capitol Hill Visit A Great Success

The testimonials are in, and Scleroderma Foundation advocates who US Capitolattended the two-day Capitol Hill Visit believe great strides were made on behalf of the scleroderma community. A total of 39 advocates from across the country gathered together on October 7th and 8th in Washington D.C. to meet with lawmakers and gain additional co-sponsors for the H.R. 2408 and S. 1545 “Scleroderma Research and Awareness Act”.  Advocates helped to gain support of both the House and Senate bills, and generated a tremendous amount of awareness for the disease.

ORWHOffice of Research on Women's Health

The Office of Research on Women's Health (ORWH) serves as a focal point for women's health research at the NIH. Established in September 1990 within the Office of the Director.

Pinn Point on Women and Autoimmune Disease
Dr. Vivian Pinn discusses the latest research on autoimmune diseases in two podcasts with Dr. Robert Carter. To listen to the podcasts, click on Part I and Part II | (transcript - PDF)

Bella OnlineTips to Fight Osteoporosis

If you have been diagnosed with osteoporosis, or believe you are at greater risk, there are things you can do to lessen the effects of this disease. This list of tips to fight osteoporosis will help you to stay strong and vital. It is never too late to toss out the bad health habits and replace them with healthy new ones!

FlaxseedInformation on Flaxseed and Flaxseed Oil

Flaxseed, called linseed in some countries, is a good source of dietary fiber, omega-3 fatty acids, and lignans. Each of these components may contribute to the health effects of eating flaxseed, but flaxseed oil contains no fiber and very little lignan.

Woman doctorTalking to Your Doctor

More and more, today’s patients are playing an active role in their health care. Patients and doctors work closely together to achieve the best possible level of health care. An important part of this partnership is clear communication. Asking the right questions—and obtaining quality information about prevention, diagnosis, treatment, and recovery—help ensure safety, prevent errors, and improve health. For example:

  • Sharing questions about prescriptions which can prevent taking too much or too little medicine
  • Being honest about symptoms can help doctors order the right tests and make the right diagnoses
  • Clear instructions after an operation or hospital stay may be the difference between complete recovery or re-injury and relapse
  • Taking along a family member, friend or caregiver to help you communicate with your doctor can help. So can writing down your questions or concerns in advance of your appointment.

NIH offers several publications that can also help promote meaningful interactions between patients and doctors.

Flue myths and factsFlu Myths and Realities

“The federal government is running a mandatory vaccination campaign.”

The federal government’s vaccination program for H1N1 flu is VOLUNTARY.  Some hospitals and localities are requiring that health care workers get vaccinated for the flu, but that is a local decision.   HHS and the CDC have included health care workers as one of our top priority groups to receive the vaccine, and several places across the country began offering H1N1 vaccination to health care workers this week.

The petition on a few selected internet sites protesting the federal government’s “mandatory” vaccination campaign is simply false in its claims. Vaccination is highly recommended as a protective measure against the flu, but is absolutely voluntary.

Flu shot availabilityFind a Flu Shot Near You

Seasonal flu vaccine is widely available. H1N1 vaccine is being shipped now. States are posting new information every day about availability, distribution to priority groups and where to get vaccinated. There is also information on State planning and preparation efforts, as well as general flu information here.

Upcoming Events

Oct. 17, (Sat.) Joint Educational Conference with Tri-State Chapter (New Brunswick, N.J.)
Oct. 18, (Sun.) Jessica Reif Walk/Run" (St. Louis, Mo.)
Oct. 19, (Mon.) Cooking Up a Cure" Celebrity Chef Auction and Food Tasting! (Ravenswood, Ill.)
Oct. 23–24, (Fri. & Sat.) A Spooktacular Evening of Fun (Livonia, Mich.)
Oct. 30–Nov. 1 (Fri.–Sun.) Scleroderma Booth at Northwest Womens' Show (Portland, Ore.)
Nov.7 (Sat.) "Stepping Out to Cure Scleroderma" (Coconut Creek, Fla.)
Nov.7 (Sat.) "Nov.7 (Sat.) "Strike Out Scleroderma" Bowl-a-thon(Moore, Okla.)
Nov.7 (Sat.) Patient Educational Conference (Houston, Tex.)
red arrow Nov. 7 (Sat.) 13th Annual "Key to a Cure" Gala (Manhattan Beach, Calif.)
Complete SF Calendar

Scleroderma Foundation, 300 Rosewood Drive, Suite 105, Danvers, MA 01923
Phone 978-463-5843 · 800-722-HOPE (4673)

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