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Scleroderma Foundation
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eLetter #822 | July 12, 2019  

2019 National Conference Chicago Design

See You in Chicago for the 22nd National Patient Education Conference
July 19-21, 2019

Our team of staff and volunteers will be ready for you to check-in and to receive on-site registrations for the National Conference starting Friday, July 19, at 4 p.m. local time, at the host hotel, the Chicago Marriott Downtown Magnificent Mile, 540 North Michigan Avenue, on the 7th floor in Salon II.  Saturday, registration opens at 7:45 a.m., but moves to the 5th floor near the escalators.

You can still register online through July 16 at

The complete Conference Program Book has been posted online, along with workshop schedules for the main conference and for Kids Get Scleroderma, Too!  


JoAnna Harper

JoAnna Harper, Pharm.D., Rp.H.

Cannabis Conundrum: Weighing the Pros and Cons of THC, CBD, and Related Compounds in Scleroderma
JoAnna Harper, Pharm.D., Rp.H.
National Patient Education Conference
July 19-21, 2019, Chicago

JoAnna Harper, Pharm.D., Rp.H., Pain Partners, LLC, will take an in-depth look into cannabis for medicinal purposes, including possible ways it works, differences between products (CBD from hemp, medical cannabis, cannabis from dispensaries, THC vs. CBD, etc.), as well as important concerns that need to be addressed. Since this is a hot topic, we anticipate many questions and opinions, with the primary goal to educate you from an open-minded, yet cautious medical provider perspective.


KGS2 Kids Get Scleroderma Too logo Conf 2019

How to Be an Effective School Advocate for a Child with Scleroderma
Kids Get Scleroderma, Too! Program
at National Patient Education Conference

Presented by Marybeth Medolla, R.N.  Advocating for your child in school is our responsibility as well as theirs. The school community can be a tremendous support system for your child. Services and help are available! You are not alone on this journey.

This workshop is offered within the Kids Get Scleroderma, Too! (KGS2) program at the Scleroderma Foundation's National Patient Education Conference in ChicagoJuly 19-21, 2019.


Advocacy Advocate Legislator Visit

Call to Action on H.R. 3446

On Monday, June 24, 2019, Representative Peter T. King (R-NY-2) introduced H.R. 3446, the National Commission on Scleroderma and Fibrotic Diseases Act. If passed into law, this bipartisan, budget-neutral bill would establish a commission to improve coordination of NIH-support research related to scleroderma and other fibrotic diseases.

Sign and return the advocacy letter asking your member of Congress to cosponsor our bill! All advocacy letters are hand-delivered to members’ office on Capitol Hill.  Make your voice heard!


NORD logo stacked

Self-Advocacy and Care Coordination
Webinar: July 24, 2019; 2 p.m. Eastern

Join us for an upcoming NORD (National Organization for Rare Disorders) webinar on self-advocacy and care coordination.  Presenting will be Laran Hyder, Director of Education and Outreach at the Neuroendocrine Tumor Research Foundation (NETRF), and Jill Pollander, Director of Patient Services at NORD.


Ticket to Work - WISE 2018

Putting it Together:  Reasonable Accommodations and the Path to Employment
Webinar: July 24, 2019; 3 p.m. - 4 p.m. Eastern

Join Choosework on July 24 to discuss how reasonable accommodations may help you on the path to financial independence through work. Plus, presenters will talk about resources, services and supports that are available for people with disabilities as they make the decision to find work, search for a job and transition to the workplace.


Michigan August Support Group

Cooking with Creativity for the Scleroderma Child

Parents of Children with Scleroderma Virtual Support Group: August 7, 7:30 p.m. - 9:00 p.m.

Learn how to have more fun with your family and your food.  Tune into the August 7 virtual support group to learn helpful tips and recipies that will meet your child's dietary needs with scleroderma and will "wow" the whole family. 


Direct Mail 2019 Q3 Jill Seaman eLetter

Jill Seaman (center),
Dx 2009, and family

Life-Changing Impact

It’s individuals like Jill Seaman and her family who inspire the mission of the Scleroderma Foundation.  Providing patient education programs and a growing network of support groups around the country are resources needed while the Foundation works on the ultimate goal of finding a cure.

Jill attended a patient education event hosted by her local chpater in Colorado and credits the Foundation for changing the course of her life.

“Without the Foundation I wouldn’t have known about stem cell, which has ultimately saved my life. I believe the Scleroderma Foundation is like a friend that helps you find answers and listens when you need a compassionate ear and is actively working to help find a cure for this terrible disease.” Jill Seaman, diagnosed 2009

Read more about Jill and help support the work and mission of the Scleroderma Foundation.

2019 Stepping Out Denver Woman More than Scleroderma

Why Do You Step Out to Cure Scleroderma?

Stepping Out to Cure Scleroderma is a fundraising event that brings together family and friends of those who have scleroderma. The monies raised by individuals and teams are used to advance the Scleroderma Foundation's three-fold mission of support, education, and research.

If online registration is closed, please sign up in person at the walk site on the day of the event.

July 27:  Columbus OH
July 28:  St. Paul MN
Aug.  3:  Dayton OH
Aug.  4:  Aurora IL
Aug. 10Cleveland OH, York PA
Aug. 17San Diego CA
Aug. 18Germantown WI

Find more walks at

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eLetter Skips a Week, July 19

The eLetter will not be distributed next week, Friday, July 19, while the Scleroderma Foundation's National Patient Education Education is underway in Chicago.  

To see photos from the National Conference, search social media for these hashtags:

  • #TheSkystheLimit
  • #Scleroderma2019
  • #KidsGetSclerodermaToo

You can also follow us on Facebook, Twitter, and Instagram.

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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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