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Insights eNewsletter FOR THE SCLERODERMA COMMUNITY |
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Dear ,
Much activity has taken place since our last issue...
We hosted the first in our series of educational webinars and began preparations for our second session with Dr. John Varga of Northwestern University. If you were unable to join us for Dr. James R. Seibold's presentation on the current state of scleroderma clinical trials, click here to view the live recording.
We also gathered with friends old and new for great food, wine and laughter at our 27th Cool Comedy - Hot Cuisine at Carolines in New York. Behind the humor is a very meaningful purpose to raise awareness for scleroderma and the funds that allow our research progress to continue. We are tremendously grateful to all that commit their time, talents and support to make this event a success.
As you prepare to enjoy the Thanksgiving holiday with family and friends, visit our Facebook page and share with us what you are thankful for. Also, please remember the Scleroderma Research Foundation this holiday season. By supporting our research program, you provide hope to the many patients who live with scleroderma and we thank you for your kindness and generosity.
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Join SRF's Live Webinar - Thursday, December 15, 2011
 Join us for our second webinar in a series designed to educate patients and others in the scleroderma community. December's live, free webinar will feature Dr. John Varga, Director of the Northwestern Scleroderma Program and the John and Nancy Hughes Professor in the Division of Rheumatology. "From Laboratory Bench to Bedside Care: Taking Research to the Patient" will focus on how advancements in the science of scleroderma are translating to patient care.
The SRF Webinar Series is a free service to help patients, physicians, family members, friends and others to better understand this complex disease. Our 2011-2012 Webinars will feature guest speakers ranging from experts in the research community to leading physicians who treat scleroderma patients. Webinars will be broadcast live and also recorded for later viewing on the SRF website.
Our upcoming Webinar will take place on Thursday, December 15, 2011 at 9:00 AM Pacific Time. Click here to register now. If you were not able to join us in October for Dr. James R. Seibold's "Progress and Promise in Scleroderma Clinical Research," which focused on clinical trials and the vital role they play in advancing research to improved therapies and a cure, please click here to listen to the recorded session. |
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Researchers Investigate Link Between Autoimmune Diseases And Wounds That Don't Heal
Millions of Americans suffer from wounds that don't heal, and while most are typically associated with diabetes, new research has identified another possible underlying cause - autoimmune diseases. The finding represents an unappreciated link that could lead to important new insights in wound healing, say researchers at Georgetown University Medical Center.
The study was sparked by the keen observation of Georgetown rheumatologist Victoria Shanmugam, M.D., who began noticing something rather unusual in her patients with autoimmune diseases - any open wound they had was very slow to heal. Their recovery was even more protracted than in patients with wounds who have diabetes, a disease that is notoriously damaging to blood vessels and to normal skin repair. Read more...
Click here to read more news regarding scleroderma related research. |
In Honor of National Caregivers Month...
Caring for a Loved One: 10 Ways to Deal With Caregiver Stress
It's no secret: Helping to care for a loved one exacts a steep emotional toll. One study found that as many as one in three caregivers rate their stress level as high, and half say they have less time to spend with family and friends.
But when you're caring for others, it's critical that you first take care of yourself. By not doing so, you put yourself at risk of exhaustion, health problems and even total burnout.
Visit the Patient News section of our site for more articles to keep you informed.
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Cure Crew: Swinging (and Slicing) for Scleroderma
The SRF thanks our Cure Crew members who have turned their passion for golf into amazing results for scleroderma research.
Beth Selbe Lasita (pictured here with her daughter, Gianna) held her annual tournament this October just outside Austin, Texas at Lake Cliff Country Club to honor her mom, Betty Selbe, who lost her battle to scleroderma in 2009. Together with husband Tony Lasita, family, friends and colleagues the tournament raised nearly $30,000 to benefit scleroderma patients.
In addition to Beth, we also thank our growing network of golfers who hit the links this summer to raise funds and awareness for research.
- The Dziak family of Fairview Park, Ohio held their annual Patricia Dziak Memorial Scleroderma Scramble and raised $1,400
- Since 2003, Joe Peleska and his family in Blair, Nebraska have held their tournament to honor his father. This summer they raised more than $4,300
- In Post Falls, Idaho Patti Marquis raised more than $6,000 at her sixth annual tournament to honor LPGA professional Bobbi Salmon, a scleroderma patient and others
- Grace Cucchissi and friends at the Cherry Creek Golf Course in Long Island, New York held their first tournament to benefit the SRF and also raised $6,000
We are deeply grateful to this dynamic group for their commitment to the Scleroderma Research Foundation and for helping us to improve the lives of those living with scleroderma. Click here to learn about how you too can make a difference!
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Please Don't Shake My Hand - Providing Compassionate Care When Touch Is Painful
This topic was raised at a recent Bay Area Support Group meeting. We were reminded how much this small gesture can be taken for granted and share this article.
After many years as a nurse in an intensive care unit, I started working as a nurse practitioner in a busy rheumatology practice in 2000. From my background in retail management and the intensive care unit, I had been taught that a handshake was part of the proper introduction to a new patient. (See Figure 1, p. 37.)
What I didn't expect from greeting rheumatology patients with a handshake, though, were the furrowed brows, looks of concern, and hesitant hands coming at me when I did offer my hand. I quickly learned that patients were resistant to shake hands out of fear that their hand would be hurt by this common salutation. Since then, I stopped shaking patients' hands-until I received a particular office memo. Read more... |
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Cool Comedy - Hot Cuisine
SRF Board Member Bob Saget hosted Cool Comedy-Hot Cuisine on November 7th in New York City with appearances by Seth Meyers, Colin Quinn and Jeff Ross.
With a festive live auction and matching grant supported by presenting sponsor Actelion Pharmaceuticals, the evening raised $600,000 for scleroderma research and featured the Hot Cuisine of Bravo Top Chef Masters Susan Feniger and Mary Sue Milliken.
Thank you to everyone who helped make this night a success!
Visit us on Facebook to see more pictures from the event.
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The Scleroderma Research Foundation is committed to funding the most promising, highest quality research aimed at improving the lives of those living with scleroderma. Thank you for making our progress possible. Wishing you and your loved ones a very Happy Thanksgiving!
Sincerely,
Amy Hewitt
Executive Director
Scleroderma Research Foundation |
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