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Flexible hands

Keeping Hands Flexible

by Elaine Sobin, (originally published in "Scleroderma Voice," 2002 #3)

You simply must fight scleroderma’s impact on your hands. From my own non-expert experience, the only alternative is a slow, inexorable progression to what I saw at a scleroderma meeting: a lovely lady who had both hands frozen into clenched fists, still feeling pressure. Fortunately, she had a kind husband who did everything she couldn’t.

I’ve had scleroderma for some 40 years, luckily not too badly. Except for needing to have my esophagus stretched, my only problems have been small mouth and curling fingers on both hands...

Successful Living with Scleroderma book
Scleroderma Strategy
Guidebook on Sale

"Successful Living with Scleroderma, a Balance Strategy Guidebook," is on sale throughout the month of August at the Scleroderma Foundation Store. The 80-page guidebook is on sale for $10 plus shipping; normally it is $15.

The guidebook is authored by Robert H. Phillips, Ph.D, a psychologist and author, who last month led a workshop at the National Conference called "Dealing with Depression While Coping with Scleroderma." His workshop was very well received, according to written evaluations from those who attended it.

The guidebook contains dozens of techniques to help people living with scleroderma to regain control of their lives. To order a copy, call 1-800-722-HOPE.

 

Scleroderma Foundation eLetter

Friday, August 3, 2007– Issue #204

eLetter Archive

Healthday.com Web site launches story on scleroderma

"Symptoms can range from hardened skin to damagedScleroderma internal organs"

(HealthDay News) -- The skin thickens and tightens, becoming deformed and unyielding. Then, the skin around the body's joints allows for less and less bending. Hands,elbows and knees all become stiff.

Scleroderma Foundation National Conference award winners
Pictured, from left: David Parker, Rick Silver, M.D, Mary Webb, Brian Adams, Mary Blades, Josephine Battany, Barb Heenan, Tom Curran, Kris Garthe, Walter Coyle, April Simpkins, and Marie Coyle.

2007 National Conference Award Winners

Several individuals and chapters were honored at the 2007 National Conference for their efforts in promoting the mission of the Scleroderma Foundation. Selecting a finite group is always difficult because so much was accomplished by so many last year.

Foundation Teen Ambassador Lauren Beeson and Youth Ambassador Samantha Murray helped Foundation Board Chair Joe Camerino, CEO Frannie Waldron, Foundation Chief Development Officer Robert Riggs and Foundation Chapter and Support Group Manager Krissy Nirdlinger hand out the awards.

The award winners are:

Outstanding Patient Support – Southern California Chapter. The Southern California Chapter was selected for its outreach to the large Spanish speaking population in its area. Office assistant Josephine Battany, who speaks Spanish, accepted the award along with chapter Executive Director Brian Adams.

Outstanding Chapter Fundraising Award – Missouri Chapter. The Missouri Chapter was selected for this competitive honor for increasing overall funds by more than three-fold from 2005-2006. The chapter held three Stepping Out to Cure Scleroderma walks in 2006. An emotional Mary Blades, president of the chapter, accepted the award.

Outstanding Chapter Public Awareness Award – Tennessee Chapter. For the past six years, the Tennessee Chapter has participated in Women’s Expos, a consumer tradeshow that attracts thousands each year. The chapter has been able to raise awareness of scleroderma in Tennessee by attracting foot traffic to its booth through giveaways. Once at the booth, a volunteer explains the disease to the visitor. Chapter President April Simpkins accepted the award.

Outstanding Chapter Education Award – New England Chapter. The chapter’s patient education seminar, a full-day program, attracted a large group of attendees from New England. The diverse panel included a lung specialist, a make-up artist and a workplace specialist. Chapter Executive Director Tom Curran and President Marie Coyle accepted the award.

Fundraiser of the Year – Denver Jaycees. For many years, the Denver Jaycees have organized and run a mini golf tournament to benefit the Colorado Chapter. The event also includes a dinner and auction, with all proceeds benefiting the chapter. Mary Webb from Colorado accepted the award on the Jaycees behalf.

Support Group Volunteer of the Year – Barb Heenan. Support Group leader in Omaha, Nebraska for the past five years, Barb has tripled attendance at her bimonthly meetings while organizing a Stepping Out to Cure Scleroderma walk and patient seminars. Barb is much-loved in her group, but credits her fellow members for making the group function as well as it does.

Chapter Volunteer of the Year – Bunny Garthe. President of the Evergreen Chapter, Bunny was involved in organizing the first Stepping Out walk, and is a great support for people who have no hope.

Messenger of Hope – Kris Garthe. Bunny’s daughter Kris was the driving force for the first walk. Very willing to share her story, Kris survived a stem cell transplantation procedure seven years ago. Her ever-present smile lights up a room.

National Volunteer of the Year – Walter Coyle. Walter has been involved in the scleroderma cause for nearly 30 years. A member of the board of the New England Chapter, Walter voluntarily served as interim executive director of the National Office for three months in 2006 while the Board of Directors searched for a new chief executive. Walter has served on the national board and volunteers daily on the New England chapter.

Doctor of the Year - Rick Silver, M.D. Dr. Silver is a rheumatologist and a professor of rheumatology at the Medical University of South Carolina. Well loved and respected by his patients, Dr. Silver has long been a friend to the Scleroderma Foundation, serving on both the Medical Advisory Board and chairing the research grant peer review committee. Much is asked of Dr. Silver, and he always answers the call.

Founder’s Award – David Parker, J.D. Mr. Parker, a partner in a Los Angeles law firm that bears his name, has been involved in the scleroderma community for 20 years. He has faithfully served as a member of the Board of Directors in many capacities, including the last eight as board secretary.

Unique Surveillance Programme Confirms The Clinical Safety Of Bosentan In Pulmonary Arterial Hypertension

(Medical News Today) - The safety profile of bosentan (Tracleer®), an endothelin receptor antagonist approved for the treatment of pulmonary arterial hypertension (PAH), has been confirmed in a unique large-scale pan-European surveillance programme, according to a study undertaken by Marc Humbert (Antoine Beclere Hospital, Clamart, France) and his colleagues.

Upcoming Events

August 4 (Sat.): All-in for Scleroderma Poker Tournament (Los Angeles, Calif.)
August 18 (Sat.): Delaware Valley's Stepping Out to Cure Scleroderma Walk (York, Pa.)
August 23 (Thurs) "Party at the Mart" for Scleroderma Research! (Chicago, IL)
SF August Calendar

Scleroderma Foundation, 300 Rosewood Drive, Suite 105, Danvers, MA 01923
Phone 978-463-5843 · 800-722-HOPE (4673)

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