2006: A Look Back
In three days, we turn the calendar ahead to the
year 2007. But before we do that, let’s take
a look back at 2006 and what it meant for the scleroderma
community.
In the area of patient education, the Foundation,
through national and its affiliated chapters and
support groups, raised awareness of scleroderma
through the media. Stories featuring physicians
and patients with scleroderma were featured in the
"New York Times," the "Wall Street
Journal" and other daily and community publications.
Chapter members were interviewed on television as
well, including the "Today Show" and the
"CBS Early Show," among others.
Bobbi Salmon, a professional golfer living with
scleroderma, spearheaded the concept and production
of the Foundation’s public service announcement
distributed to chapters and television stations
across the country. Toward the end of the year,
she was featured in a remarkable seven-minute feature
on the Golf Channel.
Jim Filanc, whose sister died of scleroderma and
lung cancer in 2005, spent much of this year raising
money and awareness of scleroderma through his off
road motorcycle team, Racing for Life. Still others
raised both funds and awareness through special
events and any variety of ways. To them, we thank
you.
Both chapters and national through the annual conference
shared the latest information on treatment advances,
coping mechanisms and more through seminars and
conferences, literature and publicity campaigns.
The Foundation’s weekly eletter, an electronic,
membership-based newsletter, continues to increase
in readership, as it is now sent via e-mail to almost
8,000 members, an 11 percent increase from 2005.
In the area of patient support, 15 new groups
formed in 2006. Chapters and support groups are
working well together, as some chapters trained
support group leaders in their geographic vicinity
on areas such as leadership, management, and outreach.
Some support groups have seen a big rise in attendance
at meetings, and several folks are working across
state lines to offer their support. The Foundation’s
Get Connected Bulletin Board allows persons living
with the disease to communicate electronically with
each other.
In the area of research, the Foundation
funded grants for scleroderma researchers for the
17th consecutive year. More than $1 million was
allocated to the program.
While no cure for scleroderma was identified in
2006, much progress was made and reported in respected
trade journals. Drugs were shown to help with the
prevention of digital ulcers and lung function and
for patients with pulmonary arterial hypertension.
We expect more advances to be made in the coming
year.
Listed below are just some of the highlights from
2006.
January
- Joseph Camerino, Ph.D., is appointed chair
of the Board of Directors of the Scleroderma Foundation
- The Foundation, through its Peer Review Committee,
announces it will fund $1.025 million in research
grants to eight researchers for the 2006 funding
cycle
- A study conducted at the University of Pittsburgh
revealed the inhaled drug cyclosporine showed
a decline in the incidence of lung transplant
rejection
February
- Tom Curran is hired as the new executive director
of the New England Chapter of the Scleroderma
Foundation
- The Foundation announces a partnership with
ppc Racing and race car driver Kenny Wallace for
the 2006 NASCAR Busch Series. The Foundation served
as an associate sponsor of his vehicle, creating
brand awareness on the racecar, billboards, race
uniforms and on wallet-sized race schedules in
AutoZone stores throughout the country
- The Foundation announces its partnership with
Nitro Tire Racing for Life off road motorcycle
team to raise money and awareness of the Foundation
March
- An Italian physician reported that autologous
stem cell transplantation produced long-term benefits
in a small set of patients with severe systemic
scleroderma. She reported her findings at a congress
on skin, rheumatism and autoimmunity
- Jodi Danois is named executive director of the
Southeast Florida Chapter of the Scleroderma Foundation
April
- The drug Levitra significantly decreased the
duration, frequency and severity of attacks of
Raynaud’s disease in an open-label pilot
study conducted by doctors in Germany. The findings
were reported in "Rheumatology News"
- The Baton Rouge (LA) Scleroderma/Raynaud’s
Support Group holds the first of what will be
many Scleroderma Foundation Stepping Out to Cure
Scleroderma walks throughout the country
- The Discovery Health Channel airs a segment
on scleroderma, raising awareness of the disease
and the difficulty in arriving at an accurate
diagnosis
May
- Ms. Wheelchair America Juliette Rizzo and the
Delaware Valley Chapter were briefly interviewed
on the "Today Show" leading up to Scleroderma
Awareness Month
June
- The Tri-State Chapter was briefly interviewed
on the "CBS Early Show" during Scleroderma
Awareness Month
- The New England Chapter announces at a patient
education seminar plans to triple its research
funding pledge to the Foundation to $150,000
- A study reported in the "New England Journal
of Medicine" revealed the drug Cytoxan showed
some promise for people living with scleroderma
July
- The Foundation holds its annual National Conference
in Minneapolis. Roberta Diddel, founder of Psychology
Works, an organization dedicated to helping people
cope with chronic illness, provides the keynote
address, “The Tinkerbell Effect: How Positive
Thinking Can Save Your Life.” Dan Furst,
M.D., delivered the keynote address, “Scleroderma:
A Treatable Disease” in which he detailed
research and treatment options and the effectiveness
of those treatments. In between, workshops ranging
from end of life issues, to Raynaud’s, to
Medicare/Medicaid issues were offered. Eight awards
were handed out to chapters and individuals
August
- Encysive’s drug Thelin, used to treat
pulmonary artery hypertension, receives clearance
for use by patients in European Union countries
September
- " Rheumatology News" reported the
drug Tracleer improved heart function in patients
with systemic scleroderma
- Frannie Waldron, interim executive director
of the Foundation, is named chief executive officer
by the Board of Directors
October
- A successful National Gala is held in Las Vegas.
Friends of the scleroderma community are honored
November
- Scleroderma patient and artist Theresa Nadeau
raises awareness, money through her new Web site
- Liz Van Dzura is named new executive director
of the Delaware Valley Chapter
- Initial trials indicate reduced intensity stem
cell transplant to be safe for scleroderma patients
- National Institute of Health Web site lists
scleroderma research studies summary
- The University of Texas-Houston Medical School
wins an NIH grant to help better understand scleroderma
causes
- The drug Ambrisentan appears to help people
with pulmonary arterial hypertension, according
to an abstract presented at the American College
of Chest Physicians. The drug is still involved
in clinical trials and has not been approved for
use
- The pharmaceutical company Actelion announces
new support programs for patients taking the PAH
drug Tracleer
December
- Joan Provizer, Robert Kacick and Carol Feghali-Bostwick,
Ph.D., are elected to three-year terms to the
Scleroderma Foundation Board of Directors
- For patients with pulmonary arterial hypertension
(PAH), adding inhaled Ventavis to treatment with
Tracleer — two different classes of drugs
often used individually to treat PAH—increases
exercise capability, reduces clinical deterioration
and, in some cases, improves diagnostic functional
class by one stage. The study appeared in the
December 2006 issue of the "American Journal
of Respiratory and Critical Care Medicine,"
published by the American Thoracic Society.
From all of us at the Foundation, we wish you
a healthy and happy new year.
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