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eLetter #835 | October 18, 2019  

YouTube 2019 Khanna GI Issues

Dinesh Khanna, M.D., M.S.


GI Issues in Scleroderma
2019 National Conference Video

Dinesh Khanna, M.D., M.S., University of Michigan Scleroderma Center, presented "GI Issues in Scleroderma" at the Scleroderma Foundation's 2019 National Conference in Chicago, Illinois.  His presentation, along with 13 others, was videotaped and is now posted on the Foundation's YouTube channel.

WATCH VIDEO

2019 Conference Award Awareness Ohio

(L-R) Cos Mallozzi, Foundation Chairman, Lucille Miller and Demeshia Montgomery of the Ohio Chapter


Ohio Chapter Recognized for Outstanding Awareness Efforts

The 2019 Outstanding Chapter Awareness award was presented to the Ohio Chapter. The chapter consistently keeps awareness and advocacy as integral parts of its operations. From Stepping Out walks to patient education events, from newsletters and social media posts, to participating in advocacy efforts at the local, state, and national levels, advocacy and awareness are front and center. The chapter's Demi Montgomery played a vital role in getting Governor John Kasich to sign a law in 2017 officially declaring June 29 as Scleroderma Awareness Month in Ohio. That accomplishment motivated the Ohio Chapter to take the lead in creating a guide for all chapters to have their state governments declare June as Scleroderma Awareness Month. Congratulations, Ohio Chapter!

AWARDS

DC Capitol Dome Cherry Blossoms portrait


It's Easy to Advocate!

All you have to do is sign the advocacy letters asking your U.S. Representative and Senators to co-sponsor H.R. 3446 and S. 2477.

The identical bills, titled National Commission on Scleroderma and Fibrotic Diseases Act of 2019, are bipartisan and budget-neutral, and are designed to improve coordination of research related to scleroderma and other fibrotic diseases already funded by the National Institutes of Health.

You can scan the letters and email them to advocacy@scleroderma.org, or mail them to the Scleroderma Foundation, ATTN: Advocacy, 300 Rosewood Drive, Suite 105, Danvers, MA 01923.

READ MORE

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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 seven now through November in seven different states.

CALENDAR

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Health Advocacy Summit Group


Health Advocacy Summit

Sat., Oct. 19: Edinburg, Texas

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

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.

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

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

Dr. Torok

Kathryn Torok, M.D.


Managing the Needs of a Pediatric Scleroderma Patient

WEBINAR: October 24, 7 - 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

Raynaud 10 Myths 2019


10 Myths About Raynaud Phenomenon

October is Raynaud Awareness Month. Little is known about Raynaud Phenomenon.  The scleroderma community is, unfortuantely, way ahead of most people when it comes to familiarity with the disorder. Sadly, some information published about Raynaud is inaccurate, and the Raynaud's Association wants to set the record straight on "10 myths about Raynaud’s."

10 MYTHS

Isabella Manzano Conference 2019


Shared Experience

For individuals newly diagnosed with scleroderma, it can be a struggle to find reliable information and to connect with others who share the same experience. That’s where the Scleroderma Foundation comes in.

A year ago, Isabella was diagnosed with scleroderma at the age of 13. Because of generous donations, she and her mother, Genieva, received a scholarship to attend the Foundation’s National Patient Education Conference where they found trusted information and connected with other scleroderma families. Their outlook on the future changed for the better.

The conference features a separate youth and family educational program called “Kids Get Scleroderma, Too.” Workshops, games, and activities encourage learning while having fun. Isabella's favorite sessions were those where she learned about how others were living with scleroderma. Isabella is now armed with a better understanding of the disease she will live with and new friends she can connect with throughout the year.

PLEASE GIVE TODAY

Clinical Trial Opportunity

Research Participation

Cumberland Pharmaceutical HeartIf you are an adult with systemic sclerosis (SSc), you may be eligible to take part in a research study sponsored by Cumberland Pharmaceuticals aimed at evaluating an oral study drug called ifetroban to determine if symptoms improve.

To learn more about ifetroban for systemic sclerosis, please call (615) 627-4121 or email bkaelin@cumberlandpharma.com.

Eligible subjects will be reimbursed for their time and travel.

 

 
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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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