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eLetter #805 | March 15, 2019  

2015 ATS PAR image


Meet the Experts:  Taking Charge of Your Lung Health

American Thoracic Society, Public Advisory Roundtable, 13th Annual FREE Patient/Family Forum
Saturday, May 18, 2019, 10 a.m. - 2 p.m.
Hyatt Regency Hotel, Dallas, Texas

With Anne-Marie Russell, Ph.D., MSc.N., Daniel Croft, M.D., M.P.H., Narelle Cox, Ph.D., Kathleen Lindell, Ph.D., and Kelly Chin, M.D.

Welcome message delivered by Kerri Connolly, Chair of the ATS PAR and Scleroderma Foundation Director of Programs & Services.

Please RSVP by email to cwhite@thoracic.org no later than Wednesday, May 8, 2019. For more information, please contact Mr. Courtney L. White, (212) 315-8640.

read more

2019 National Conference Chicago Design

National Patient
Education Conference

July 19-20-21, 2019
Chicago, Illinois


Beat the March 20 Deadline to Apply for a Conference Scholarship!

Conference scholarship applications must be received in the Scleroderma Foundation National Office by 5 p.m. Eastern Time on March 20. Late applications will not be considered. Download the application form at scleroderma.org/scholarship and submit via email to: sgianetta@scleroderma.org. Paper applications may be mailed or faxed to: Scleroderma Foundation, Attention: Scholarship Committee, 300 Rosewood Drive, Suite 105, Danvers, MA 01923. FAX: (978) 777-1313

Scholarships are for first-time attendees who have scleroderma, including adults and children, or a parent/caregiver of a minor child who has scleroderma.

Visit www.scleroderma.org/conference for details.

Stepping Out Logo 2018 Be Part of the Cure - Web


Stepping Out to Cure Scleroderma 2019

Plan Ahead for April Walks

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 fulfill the Scleroderma Foundation's three-fold mission of support, education, and research.

find more dates: scleroderma.org/steppingout

Ticket to Work - WISE 2018


Achieving Financial Independence with Ticket to Work and an ABLE Account

Webinar: Wednesday, March 27, 3 - 4:30 p.m. E.T.

Register now for the March WISE webinar
and learn more about:

  • How ABLE accounts may help certain people with disabilities and their families save for the future while protecting eligibility for public benefits
  • Updates and changes to ABLE programs that may help you save more money
  • How an ABLE account and Social Securitys Ticket to Work (Ticket) program can help you achieve financial independence through work

Register today: https://choosework.ssa.gov/wise

2019 National Conference Chicago Design


Register Today for the National Patient Education Conference

July 19-20-21, Chicago, Illinois

Register online for the 2019 National Patient Education Conference. The early bird discount is available until May 22, after which regular rates apply. Hotel information is shared upon conference registration. (If you are applying for a scholarship, please do not also register for the conference online.)

Register today!

Sign up for conference e-Alerts.

Eating Well with Scleroderma 2019


Eating Well with Scleroderma

An updated brochure (January 2019) that addresses Eating Well with Scleroderma has been posted on the Scleroderma Foundation website. [scleroderma.org > patients & newly diagnosed > brochure downloads]

When a person faces a potentially debilitating chronic disease, such as scleroderma, in which fatigue, digestive difficulties, and nutrient deficiences are common, a high quality, nutritious diet must take center stage to enhance quality of life and successful management of symptoms.

The Scleroderma Foundation thanks Linda Kaminski, M.SN., R.D., C.D.E., nutrition and lifestyle consultant, and Dinesh Khanna, M.D., M.S., associate professor of medicine, director, University of Michigan Scleroderma Program, for their assistance in preparation of this brochure.

scleroderma.org/downloads

man happy older


End of Life Care

End-of-life care describes support and medical care given during the time surrounding death. Read the articles published online by the National Institute on Aging to learn what happens before, during, and after dyring.

read more

african american health stock photo


Scleroderma Genomics and Health Disparities Unit

Scleroderma is a health disparity in African Americans who have a higher prevalence of scleroderma than European Americans. African Americans with scleroderma have an earlier age of onset and are more likely to manifest diffuse skin involvement, interstitial lung disease (ILD), and pulmonary arterial hypertension.

The Scleroderma Genomics and Health Disparities Unit of the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) is focused on enhancing our understanding of the genetic risk factors involved in scleroderma pathogenesis.

read more

Dee and Jake Burlile

Dee Burlile (Dx 2016)
and son, Jake


Reach for the Cure

"I just want my mom back," Jake Burlile, age 11.

Seven years ago, Dee Burlile’s three kids found her collapsed on the floor, which led to her diagnosis of systemic sclerosis in 2016. Jake and his sister (13) and brother (15) have become caregivers to their mother.

"That my children could live the rest of their lives without worrying and taking care of their mother."

That's the future Dee envisions when asked "What is the promise of scleroderma research?"

The need is great. The time is now. The choice is yours. Please give generously: scleroderma.org/reachforthecure

SF Logo Standard JPG


Call for Nominations

The Scleroderma Foundation seeks to expand its National Board membership among those who are actively involved at the chapter level and have expertise in: fundraising/development, social media/technology, accounting/finance, human resources, nonprofit boards, and general business. Retired and non-practicing health care professionals will also be considered. The deadline is March 22, 2019.

To suggest a candidate for consideration, please complete the online form: www.scleroderma.org/boardcandidates

Seeking Patient Advocates

focus group stock photoThe Scleroderma Foundation is working with a US-based pharmaceutical company on an initiative to identify patients with scleroderma who are willing to share their stories as part of an educational program for the scleroderma community.

The program is specifically looking for patients who meet the following criteria:

  • Diagnosed with scleroderma and associated lung involvement (also known as SSc-ILD)
  • Comfortable speaking to others about their disease journey
  • Willing to attend two-day training (travel expenses covered)

If you or someone you know might be interested in learning more about this program, please reach out to: elizabeth@mypatientstory.com. Please respond by the deadline of Friday, March 22.

Please note that your response will be directed to a representative of the pharmaceutical company, not to a Scleroderma Foundation representative.  

Clincal Trial Update/Opportunity

Localized Scleroderma Clinical Research Trial

If you or someone you know have been clinically diagnosed with localized scleroderma or morphea that is difficult to control/resistant to treatment, you may be interested in participating in a Phase 1 clinical research trial for an experimental gene therapy.

  • Participant must be at least 18 years of age or older
  • Study-related dermatologic examination and laboratory studies performed at no charge
  • Investigational medication supplied for this 52-week study
  • Reimbursement provided for travel and/or out-of-pocket expenses for qualified participants

To learn more, call contact Paddington Testing Company, Inc. at 215-563-7330.
More information is available at https://clinicaltrials.gov/ct2/show/NCT03740724.

 
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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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