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eLetter #833 | October 4, 2019  

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Senate Bill Introduced

Last month, U.S. Senator Kirsten Gillibrand (D-NY) introduced S. 2477, the National Commission on Scleroderma and Fibrotic Diseases Act of 2019. Senator Susan Collins (R-ME) was the first to cosponsor the bill, which is identical to H.R. 3446 introduced in June in the House. Both are bipartisan and budget-neutral and will improve coordination of research related to scleroderma and other fibrotic diseases already funded by the National Institutes of Health.

A letter from you can help move the bill out of committee onto the floor for a vote. Download and sign the advocacy letter to ask both of your U.S. Senators to cosponsor S. 2477. Completed letters are hand-delivered to Senators' offices on Capitol Hill. Mail the signed letter to the Scleroderma Foundation, Attn: Advocacy; 300 Rosewood Drive, Suite 105, Danvers, MA 01923.

SENATE ADVOCACY LETTER

YouTube 2019 Frech Emergencies

Tracy Frech, M.D., M.S.


Emergencies in Scleroderma
2019 National Conference Video

Tracy Frech, M.D., M.S., University of Utah, Salt Lake Veterans Affairs Medical Center, presented "Emergencies in Scleroderma" at the Scleroderma Foundation's 2019 National Conference in Chicago, Illinois.  Her lecture, along with 13 other presentations, was videotaped and is now posted on the Foundation's YouTube channel.

WATCH VIDEO

2019 Conf Award Support Group Volunteer Roberta Mariella

(L-R) Jack Armitage, Executive Director, New England Chapter, with Roberta Mauriello, Support Group Volunteer of the Year


Roberta Mauriello: Support Group Volunteer of the Year

The 2019 Support Group Volunteer of the Year, Roberta Mauriello, has served as a support group co-leader and has averaged 12 monthly meetings for nearly 20 years.  She is a tireless advocate for her support group members and for the New England Chapter.  She sits on the local PAH (pulmonary arterial hypertension) committee with area doctors and serves as the representative of the scleroderma community.  Roberta is skilled at bringing high-quality speakers to her support group. As a result, the New England Chapter has eight group members in a research study in partnership with Tuft's Medical Center and the Dartmouth Hitchcock Hospital. Roberta was a close friend of Scleroderma Foundation co-founder Marie Coyle.   Congratulations, Roberta!

AWARDS

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Scleroderma Education Programs

Learn Local. Each chapter in the Scleroderma Foundation offers at least one scleroderma education program every year. There are nine now through November in seven different states.

CALENDAR

Dr. Torok

Kathryn Torok, M.D.


Managing the Needs of a Pediatric Scleroderma Patient

WEBINAR: October 24, 2019, 7 p.m. - 8:30 p.m. Eastern

Kathryn Torok, M.D., director of the Pediatric Scleroderma Clinic at Children's Hospital of Pittsburgh, works daily with children who have scleroderma. In this October webinar, she’ll share information about managing the needs of pediatric scleroderma patients. When you sign up, you’ll receive a confirmation email with additional instructions to join the webinar on event day.

REGISTER TODAY

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Dinesh Khanna, M.B.B.S., M.Sc.


Early Diagnosis in SSc Key to Limiting Comorbidities

Dinesh Khanna, M.B.B.S., M.Sc., professor of rheumatology and internal medicine, University of Michigan, indicated that early screening and early diagnosis are critical to managing systemic sclerosis. Dr. Khanna made the statement during a presentation at the 2019 Congress of Clinical Rheumatology West in San Diego, California, in September. The presentation was reported in the online publication, Healio Rheumatology.

READ MORE

TOSS scleroderma self management


Taking Charge of Systemic Sclerosis

Often, persons with scleroderma do not know other people with the disease. They might live in a state where there is no chapter of the Scleroderma Foundation, or their community might not have a support group. This web based self-management program was designed to help you learn about scleroderma, to manage your symptoms, and to learn strategies to help you advocate for yourself.

Knowledge and advocacy skills need to be continually woven, like a basket, into one's daily life. Register today to gain skills and confidence to manage systemic sclerosis (SSc) symptoms, and to develop strategies to advocate for yourself. Peer Mentors from the program will empower you to take control of your life and your healthcare.

LEARN MORE

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Health Advocacy Summit Group


Health Advocacy Summit

Health Advocacy Summit facilitates day-long, no-cost advocacy events for young adults with invisible chronic and rare diseases. The events bring speakers on topics such as storytelling, navigating school and workplace, overcoming emotional barriers, as well as health policy.

Please visit www.healthadvocacysummit.org to register and follow us on Instagram and Facebook @healthadvocacysummit and Twitter @HA_Summit to keep updated! Please email Sneha at sneha@healthadvocacysummit.org with any questions.

Raynaud's Awareness 2019 logo


October is Raynaud's Awareness Month

“Raynaud’s is far more common than people think,” says Lynn Wunderman, founder and chair of the Raynaud’s Association.  An estimated 5 to 10 percent of the population has Raynaud’s, and nine out of ten are female. “The condition can be triggered by cold temperatures indoors and out, and by everyday tasks like holding a cold glass or putting a hand in the freezer.” The group is stepping up its activities during October Raynaud’s Awareness Month to build awareness and help sufferers seek treatment and cope with the disorder.

LEARN MORE

Ticket to Work - WISE 2018


Putting it Together: Choosing a Service Provider That's Right for You"

WEBINAR: October 23, 3 - 4:30 p.m. Eastern Time

Are you thinking about working or are you already looking for work? Discover how a Ticket to Work service provider can help! This month, Choose Work’s WISE webinar will share information about the FREE services and supports that are available for eligible people with disabilities. Get answers to questions about finding the right service provider to help you reach your work goals.

REGISTER TODAY

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Helping Families Look to the Future with Hope

Genieva Manzano recalls the moment she and her 13-year-old daughter, Isabella, were told by a rheumatologist, “I’m sorry, she has scleroderma, it’s chronic and there is no cure.” No further explanation given but they knew by the tone of the doctor’s voice that this was serious, and they were scared.

We were in shock. The car ride home from the doctor’s office was quiet. Isabella just shut down either from the fear of the unknown or finally being able to put a name to what she was feeling. Once we arrived home, we immediately started Googling "scleroderma." There is so much information about the disease online. We were overwhelmed and frightened and didn’t know what to believe or trust--until we found the Scleroderma Foundation’s website. (Genieva Manzano)

Providing an accurate and up to date source of information about scleroderma is one of the most important roles played by the Scleroderma Foundation.

Your donations help to provide much needed accurate and up to date information about scleroderma.  It's one of the most important ways that the Scleroderma Foundation helps families affected by scleroderma.

PLEASE GIVE TODAY

Kansas City Stepping Out

Stepping Out Logo 2018 Be Part of the Cure - Web


Be Part of the Cure
Step Out to Cure Scleroderma

Only by raising money can we provide emotional support and disease education to address the needs of individuals with scleroderma today, while fostering research to discover the cause, understand the mechanism, and overcome the disease forever.

Sign up for a Stepping Out to Cure Scleroderma fundraising walk or 5K run near you.  Ask your family, friends, and coworkers to join your walk team and to help you raise money using effective online fundraising tools.

Below is a link to the final walk of 2019.  Online registration typically closes a day or two before the walk date, but you may register on-site on the day of the walk.

Oct.    5:  Kansas City, Missouri

SIGN UP

 
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Disclaimer: The Scleroderma Foundation in no way endorses any drugs, treatments, clinical trials, or studies reported in the eLetter. Information is provided to keep the readers informed. Because the manifestations and severity of scleroderma vary among individuals, personalized medical management is essential. Therefore, it is strongly recommended that all drugs and treatments be discussed with the reader’s physician(s) for proper evaluation and treatment.

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