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eLetter #832 | September 27, 2019  

YouTube 2019 Freed Heart Disease

Benjamin H. Freed,
M.D., F.A.C.C., F.A.S.E.


Heart Disease in Scleroderma
2019 National Conference Video

Benjamin H. Freed, M.D., F.A.C.C., F.A.S.E., Division of Cardiology Northwestern Medicine, presented "Heart Disease in Scleroderma" at the Scleroderma Foundation's 2019 National Conference in Chicago, Illinois.  His lecture, along with 13 other presentations, was videotaped and is now posted on the Foundation's YouTube channel.

WATCH VIDEO

Jerry Metz

The Honorable Jerome J. Metz Jr.


Jerry Metz: Chapter Volunteer of the Year

A doer is someone who does what needs to be done. The 2019 Chapter Volunteer of the Year award is Jerry Metz.  Need someone to help with registration? He’ll do it. Need a last-minute fill-in to orchestrate the team captain raffle? He’ll do that, too. At a Stepping Out walk, you’ll likely shout “Hey Jerry!” to get his attention. At his day job, you’d have to say “Your Honor” before addressing the Honorable Jerome J. Metz, Jr., a judge on the Hamilton County Court of Common Pleas.  To us, he’s Jerry.  He’s a founding member of the Ohio Chapter and has been involved in more roles and chapter events than we can list. Much of what Jerry does for the chapter happens behind the scenes—helping his wife Debbie Metz, president of the Ohio Chapter. Congratulations, Jerry!

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 ten now through November in eight different states.

CALENDAR

Michigan Parents Virtual Support October 2019


Medications and the Side Effects: Finding the Best Way to Help Your Child Cope

October 2, 2019, 7:30 p.m. - 9 p.m. Eastern
Kathryn Torok, M.D., Pediatric Scleroderma Clinic, Children’s Hospital of Pittsburgh

Do you wish you knew more about your child’s scleroderma medication?  Do you have questions about what a medication is or what it’s doing?  Join the October 2 Parents of Children with Scleroderma Virtual Support Group to learn helpful tips for finding the most accurate information about your child’s medication.  After registering, you will receive a confirmation email with information to join the meeting.

REGISTER TODAY

Health Advocacy Summit Logo

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.

Pulmonary Fibrosis Awareness 30 Facts 03 09-27


September is Pulmonary Fibrosis Awareness Month

During the month of September, the Scleroderma Foundation will partner with the Pulmonary Fibrosis Foundation to share 30 facts and 30 stories about pulmonary fibrosis on social media.  You can join the campaign by following @pfforg on Facebook and Twitter and with hashtag #BlueUp4PF. 

READ MORE

2018 Stepping Out Des Moines

Stepping Out Logo 2018 Be Part of the Cure - Web


Be Part of the Cure
Join Stepping 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 are links to upcoming walks.  Online registration typically closes a day or two before the walk date, but you may register on-site on the day of the walk.

Sept. 29Boston, Massachusetts
Oct.    5:  Kansas City, Missouri

ALL WALKS

 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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