Register Now for the Kids Get Scleroderma Too! Patient Education Forum
Join the Scleroderma Foundation Tri-State Chapter on October 28-29th for an
educational and social event for patients and family. Scleroderma doesn't
limit itself to adults, many children are also affected by this autoimmune
disease. Events include a Halloween Costume Party and educational workshops for
adults, young patients and siblings. This fantastic event will be held at
the Hackensack University Medical Center in Hackensack, New Jersey.
The Pulmonary Hypertension Association (PHA) presents PHA on the Road
Between 8 and 12 percent of people with scleroderma
could develop pulmonary hypertension. Looking to connect with more information
from medical professionals and network with other patients and caregivers? Join
PHA on the Road—a FREE all-day program taking place in Washington, D.C. on Oct.
1. In addition to free registration, breakfast, lunch, valet parking and
daycare are complimentary. There will be a support group just for scleroderma
patients living with PH.
We are happy to announce that select videos from the 2016 National Conference are now available online. They can be found on our YouTube channel. In our powerful closing keynote, scleroderma patient, Andrew Botieri recounts his sudden
life altering ordeal and eventual triumph over scleroderma which almost
took his life. He discusses the important of finding balance in our
lives, reducing stress and the power of mind, body and spirit. We will continue to post more videos as them become available.
American Thoracic Society Home Oxygen Patient Survey
Over 1.5 million Americans use home oxygen, a life prolonging therapy
that greatly improves the quality-of-life of adults living with chronic
lung diseases. However, over the past few years pulmonary clinicians
have noted a significant increase in problems that home oxygen users are
reporting. In addition, the Center for Medicare and Medicaid has
implemented a competitive bidding program that has led to a drastic
cutback in the availability of adequate portable oxygen delivery systems
due to the now limited reimbursement of oxygen supply companies. The
complexity and priority of this problem was first addressed at the 2015
American Thoracic Society (ATS) Nursing Assembly Planning Committee meeting when an Oxygen Interest
Group was created. As nurses caring for patients across all lung
diseases, the need to identify strategies to address these problems was
deemed a priority and to that end an Oxygen Work Group convened at the
May 2016 ATS meeting in San Francisco. One of the key goals identified
during this unique multidisciplinary meeting was the need for data to
document the precise problems experienced by patients using supplemental
oxygen. A 'Patient Supplemental Oxygen Survey" survey was developed
with critical input from clinician experts, patients, patient advocacy
organizations oxygen suppliers and payers. The survey is designed for adult lung disease patients who use oxygen at home.
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.
The Scleroderma Foundation is a qualified national nonprofit operating under 501(c)(3) status. The foundation’s federal tax identification number is 52-1375827. Our primary goal is to raise funds for our three-fold mission of support, education and research. The foundation has 20 active chapters and 160 support groups across the country.