Our sister, daughter, mother and friend Joy LoSchiavo was diagnosed with Scleroderma. Scleroderma is an
over production of collagen in the body which affects the internal organs and is considered a terminal illness.
Joy's kidneys failed and she was put on dialysis. Her mother donated a kidney and several years later the disease
attacked that kidney and she is now on in-home dialysis. She has been approved to get her second kidney transplant
and we are coming together to raise money to help cover her miscellaneous expenses related to the transplant.
Please help us support her in her time of need.
Miami Jazz Fest
November 17th & 18th
Klipsch Amphitheater at Bayfront Park
tickets on sale now!
A portion of each ticket sold will go to the American Society For Scleroderma Research, a
grass roots non-profit organization founded in 2004.
Scleroderma is an autoimmune disease affecting individuals of all age ranges, including children.
For more information go
to: www.miamijazzfest.com or call 305-405-Jazz (5299)
Donation Letter
BU researcher wins $11M in NIH grants to study scleroderma
Published: November 2, 2011
Boston University School of Medicine (BUSM) researcher Dr. Robert Lafyatis has won two grants
from the National Institutes of Health totaling $11.3 million, to fund research into the rare
disease scleroderma. One grant is worth $8 million over five years, and the other totals $3.3
million, also over five years. Scleroderma, also called systemic sclerosis, is a complex immune
disease involving widespread scarring and vascular disease within multiple organ systems, and
there are few therapies currently available.
View full article
Cookbooks are here!
A cookbook to benefit Scleroderma Research. FLAVOR-ITES designed in
a 3-ring binder for easy recipe removal or additions, contains 300 recipes
from soup to nuts along with pantry basics, measurements & substitutions,
cooking terms, helpful hints and quick fixes. All proceeds from the sale of
the cookbook will go to the American Society for Scleroderma Research.
Buy on-line $25.00, plus $4.95 per Book Shipping and Handling.
or mail Check or Money Order to:
ASFSR
C/O Linda Ann Turiano
3593 Birdie Drive, 502A
Lake Worth, FL 33467
Phone: (203) 395-8789
Email: cookbookdonation@asfsr.org
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Congressional Bill H.R. 2408
The "Scleroderma Research and Awareness Act"
This legislation is very important for research, education and survival for
those afflicted with Scleroderma. Please help by contacting your
representative in support of this bill.
- View Bill Here -
What is Scleroderma 
Scleroderma is a debilitating and too often fatal auto-immune
disease that affects 300,000 people across our country.
Scleroderma itself means "hard skin". The hardness is caused by
increased production of collagen and other proteins that cause
skin thickening and replaces normal skin structure with scar tissue.
Scleroderma can be a devastating disease and the same thickening
process may occur in the blood vessels, the lungs, the kidneys,
the intestinal tract and other key organs.
Research over the last two decades has lead to improved treatment
for scleroderma and has improved both survival and function for
individuals with this disease. While this improvement is welcome,
the fact is there is no cure and that individuals continue to be
disabled and die from the disease.
Living with Scleroderma
Coping day-to-day with scleroderma ~ Read their stories.
We Want to To Hear Your Story
If you have a story to tell about yourself or a loved one that has battled scleroderma,
we want to hear it! Submit your story to benefit those looking for support. Please email to
stories@asfsr.org
In Memoriam
ASFSR has lost many friends to this disease. They continue to inspire us to succeed in our mission.
Paul H. Fornier
Dennis Banks
$100,000.00 Check donation presented to Boston University Medical Center
Scleroderma Research Department.
From left to right: Dr. Lafyitus, Bob DeCesare, Vice President ASFSR, Joe LoSchiavo, President ASFSR,
Carmen J. Cartiglia, Treasurer ASFSR, Joy LoSchiavo, Board Member ASFSR, Lou Turiano, Board Member ASFSR
Related Links
Raising Awareness of Scleroderma
 (WTNH, Oct. 7, 2004 5:00 PM) by News Channel 8's Jocelyn
Maminta
Raising Awareness of Scleroderma (article)
(WTNH, Oct. 7, 2004 5:00 PM) by News Channel 8's Jocelyn
Maminta
Boston University Scleroderma Program.pdf
Research, Education & Patient Care in Scleroderma.
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