Scleroderma Foundation donates funds for scholarships
The Susan Marie Scleroderma Foundation of North Fort Myers donated $7,000 to the National Scleroderma Foundation Scholarship Fund, providing Southwest Florida residents with the opportunity to apply for a scholarship to attend the annual National Patient Education Conference held in Boston July 30 through Aug. 1.
Susan Marie Scleroderma Foundation Inc. President Connie Buchholz said she began the 501(c) 3 non-profit foundation in September 2007 in memory of her sister, who lost the battle to scleroderma in August 2007.
“I found this foundation after my sister passed away,” she said, adding she wanted to bring awareness to the medical and patient communities.
She explained that there were not any specifically trained doctors where her sister Susan Marie lived and they “kind of ignored her symptoms because they didn’t know anything about it.”
“If there was better information and education, she would have lived longer,” Buchholz said.
She explained that the foundation was started so she could mostly raise funds and educate the medical and patient community about scleroderma.
According to the Scleroderma Foundation Web site, scleroderma is a “chronic connective tissue disease generally classified as one of the autoimmune rheumatic diseases.” The disease is made up of two Greek words, “sclero meaning hard and derma meaning skin.”
The 2010 National Patient Education Conference “Where Revolutionary Ideas Begin” will feature a variety of workshops and seminars hosted by leading scleroderma researchers and medical professionals. This year the conference will provide information for patients, caregivers, family members and foundation staff, along with workshops featuring pulmonary hypertension, “G.I. Involvement with Scleroderma and Raynauds” and juvenile scleroderma.
According to the National Scleroderma Foundation, the goal of this year’s conference is “not only to provide educational and research-related information, but also to provide a supportive, social environment for the national scleroderma community.”
She said the convention is very worthwhile for individuals to attend.
“We encourage all scleroderma patients and their families to attend this conference,” Buchholz said.
The foundation raised $7,000 last year with the sole purpose of it being used for the scholarship fund, so they could send patients to the convention this year.
Scleroderma patients who live in Southwest Florida that cannot afford to attend the conference have the opportunity to apply for either a full or partial scholarship to attend the three-day conference.
“I think every patient should have the right to go to it if they so desire,” Buchholz said, adding that it is so important that patients have the chance to be around others with their conditions.
She said last year’s conference in St. Louis showed her just how important it is for patients to attend because it provides them with the chance to talk to others who are experiencing what they are, along with receiving support from them.
Buchholz said those patients who are interested in attending the convention have to go through the foundation’s Web site because they have an application and qualification process set up and in place.
For more information about the conference or to apply for the fund-raiser, visit www.scleroderma.org.