Helping Aly get to the 5th SSWC
Who is Aly?
For those of you who know Aly, you know the fun, loving, crazy and outgoing woman. The mother who loves her family and who has opened her door to unofficially adopt a random variety of her children’s friends. A woman who enjoys dancing, curling up with a good book and someone who wouldn’t pass up a random late night conversation. What you may not know is the struggles that she has faced the past few years dealing with pain and discomfort before being diagnosed 2 years ago with Scleroderma.
Since Aly has been diagnosed, she has joined Sclero-Support groups, including the Sclero-Sisters group and helped to create the Sclero-Elf (who is still traveling around supporting other Scleroderma patients throughout the world, participating in treatment, bringing a helping and healing hand to those who need him). Created friendships throughout the Sclero community and works to raise awareness for Scleroderma.
What is Scleroderma?
Scleroderma is an autoimmune disorder that effects the connective tissues of the body. The word itself, when broken down means “hard-skin”, which is one of the most visible manifestations of the disorder. It is estimated that only about 300,000 Americans have scleroderma, and little is known about the disease. This is why, it is so important that we help Aly get to the 5th Systemic Sclerosis World Congress.
As the World Scleroderma Foundation Mission Statement says they are “dedicated to initiating and supporting research in scleroderma in all its aspects in all regions of the world. It is also committed to improving the quality of life for scleroderma sufferers and their families. To facilitates patient oriented research both independently and in collaboration with other existing organizations and learned societies working in this field.”
The 5th Systemic Sclerosis World Congress and World Scleroderma foundation in Bordeaux, France
This is why we (Aly’s family and friends) are asking you to hold out your hand for Scleroderma, just as Aly has done in support for all her friends dealing with pain from this disease; and support her in attending the 5th Systemic Sclerosis World Congress (http://www.worldsclerofound.org). This fundraising would help cover the cost of the flight, conference costs, hotel and general needs. Aly has asked for a scholarship to attend the conference, if she is selected for this scholarship – the extra monies will be donated to the Scleroderma foundation.
How can you help?
Before this disease makes it even more difficult for Aly to travel, she wants to attend this conference to learn more about this disease, types of treatments that are available and meet doctors from around the world that treat Scleroderma. Most importantly to understand the disease, prognosis and best ways to continue to support those who suffer from the same disease that affects her.
