Conquering Sjogren’s: Follow us on our journey to change the face of Sjogren’s

Support Sjogren's This Holiday Season

Posted on Thu, Dec 26, 2013

As with any year-end non-profit donation, the age-old questions still exist - “where do my donations go?” and “what impact will they make?”  As CEO of the Sjögren's Syndrome Foundation (SSF), I take great pride in being able to answer those questions by sharing with you the many accomplishments that have been achieved by the SSF thanks to the generosity of our donors. 

s taylor headshot

This year, I am excited that we have, once again, seen amazing progress made in the fight against Sjögren’s.  Just this past month, as you may have heard, Oklahoma Medical Research Foundation completed the first genome-wide study of Sjögren’s where six Sjögren’s genes were identified.  This is the first-time that potential genes have been connected to Sjögren’s and surely gives hope for future researchers to investigate causes, progressions and treatments at the Sjögren’s genetic level. Most exciting, is that this research was completed by two SSF Research Grantees, Dr. Kathy Moser Sivils and Dr. Christopher Lessard.  Their research grants were funded by your generous contributions to the SSF and, once again, show that your donations are having a direct impact on Sjögren’s research and, specifically, this big breakthrough in Sjögren's.

That is why I appeal to you today to renew your support with a generous tax-deductible year-end gift.  Your support will allow the SSF to continue funding life-changing Sjögren’s research while also helping to further the SSF’s efforts to better the lives of those living with Sjögren's.

I also am proud to share a few additional milestones achieved this past year thanks to your support.  The SSF:                                            

  • Awarded six (6) Innovative Research Grants and three (3) Student Fellowships.
  • Continued work on the first ever Clinical Practice Guidelines for how to treat, manage and monitor Sjögren's by receiving support from the American College of Rheumatology, American Dental Association and American Journal of Ophthalmology to present a draft for endorsement and publication.
  • Held our annual National Patient Conference in Bethesda, Maryland with over 450 attendees and presentations from the country’s leading Sjögren's experts.
  • Assisted with the Restoring Access to Medication Act (S. 1647), bipartisan legislation, recently introduced to the Senate in November 2013.  This work was the continuation of my testifying before the House Committee on Ways and Means about the expense and difficulty with treating Sjögren’s with over-the-counter medication.
  • Increased our awareness efforts by adding 130 Awareness Ambassadors (now 463 nationwide) who volunteer their time to increase Sjögren's awareness in local communities across the United States.

These are just a few of the things we accomplished in 2013 and, as you can see, your donations truly are impacting our efforts and the lives of Sjögren's patients. We are truly grateful to have such dedicated members, volunteers, event participants and donors that serve as the driving force behind all we do.  I ask you to consider making a year-end gift so we can continue our efforts for all Sjögren’s patients in 2014 and beyond. Thank you in advance for your support and generosity and I wish you and your family a happy and healthy New Year.

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With sincere appreciation,

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Steven Taylor
Chief Executive Officer

Topics: Advocacy, Consumer Healthcare Products Association, Research, Venus Williams, 50in5: Breakthrough Goal, National Patient Conference

Senate Introduces New Over-The-Counter Bill

Posted on Tue, Nov 05, 2013

CongressThe Sjögren’s Syndrome Foundation, SSF, is pleased to announce that the long-awaited over-the-counter (OTC) bill, Restoring Access to Medication Act, is expected to be introduced today in the U.S. Senate by Senators Pat Roberts (R-KS) and Mary Landrieu (D-LA). This is an important piece of legislation to the SSF because Sjögren’s patients largely depend on these medications and products to treat their disease. A similar bill was introduced in the House of Representatives this summer (HR 2835).

The SSF has been working on getting OTC medical expenses covered, once again, in flexible spending arrangements (FSAs) and health saving accounts (HAS) plans so patients do not have to obtain a prescription, which places a significant strain on both patients and their healthcare providers.

Philippe Nobile Photography

In April 2012, Steven Taylor, SSF CEO, testified before the Subcommittee on Oversight of the House Committee on Ways and Means hearing about how the law’s current limitations on OTC medications impacts Sjögren’s patients.

“The cost is untenable for patients and their families, as OTC treatments are not covered by insurance, are not tax deductible and are no longer even covered under Health Saving plans without obtaining a prescription. With so many OTC products needed for treatment, having to go to a physician or dentist for a prescription for each and every one presents an undue burden,” said Taylor.

In June 2012, the U.S. House of Representatives passed the Health Care Cost Act under the Affordable Care Act that included a provision in the legislation repealing limitations on the purchase of OTC medications.

The SSF serves on many coalitions to ensure that Sjögren’s patients are not forgotten in the healthcare debate, which is why we are proud to be a part of the Health Choices Coalition (HCC) supporting this bill’s introduction in the Senate. Contact your Senators to let them know you want them to support the “Restoring Access to Medication Act!” You can find your Senator by going to www.senate.gov.

View Statement from the Health Choices Coalition

View Press Release from the Consumer Healthcare Products Association (CHPA)

***UPDATE 11.06.2013***

Yesterday afternoon, Senators Roberts and Landrieu introduced the Restoring Access to Medication Act (S. 1647) with the following original cosponsors: Senators Heller, Inhofe, Isakson, and Johanns. The Sjögren’s Syndrome Foundation will work with our fellow Health Choices Coalition partners to build momentum for this legislative effort.

Secretary Lew was quoted as saying the announcement "underscores the administration's continuing efforts to provide added flexibility and common sense solutions to how people pay for their health care." We agree that reinstating reimbursement for over-the-counter medicines without a prescription is certainly a common sense solution!

Remember to contact your Senators to let them know you want them to support the “Restoring Access to Medication Act.” You can find your Senator by going to www.senate.gov.

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Topics: Sjogren's, Advocacy, Restoring Access to Medication Act, Health Choices Coalition, Consumer Healthcare Products Association

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