As noted above, the severity of symptoms and age of onset can vary widely, even within the same family. One reason is that HSP is a group of genetically different disorders, not a single disorder. Some differences may be due to genetic mutations. A child may show symptoms before a parent and it’s possible for some family members to have very mild symptoms while others have more severe symptoms. This may be due to other genes, environment, nutrition, general health, or factors not yet understood. In some families, symptoms tend to start at younger ages with each generation. Although rare, HSP sometimes shows “incomplete penetrance”. This means that occasionally, an individual may have the gene mutation, but for unknown reasons never develop symptoms of HSP. Such individuals can still pass HSP to their children.
The CFC or Combined Federal Cam-paign is a fundraising campaign the Federal Government offers its employ-ees to participate with each year. It begins Sept 1st and goes through Dec 15th. Federal employees are allowed to pick from over 200 registered nonpro-fits to contribute to. Many CFC fairs will be held at Federal facilities throughout the campaign. This allows employees to learn about the nonprofits and make their selections.
Please let friends and family members who are Federal employees know they can choose the Spastic Paraplegia Foun-dation to donate to. The SPF CFC num-ber is 12554. The following are exam-ples of Federal employees: law enforce-ment, mail personnel, VA or Veteran’s Administration employees, Medicare, Medicaid, military and many types of governmental jobs. If donors want to know more, please have them log on to
If you have any questions or sugges-tions, please contact Jim Sheorn at email@example.com or 615-479-7369.
Please help us generate more financial resources for research.
When Clinical Trials begin in 2017 it may require as many people as possible for the Clinical Trial to be effective. If you have HSP or PLS, please add your information to our data base so we can keep you informed. We are missing a lot people's email address, so if you just want to add your email address. just enter your name, address and email and we'll add it. That way, we will be able to reach you quickly at a lower cost. Your privacy is very important to us. We will never share any of your information with any individual or company without your permission.
93 cents of every dollar you donate goes into our mission of research and service. 4 cents goes to fundraising and 3 cents goes to data management and general expenses. Our all volunteer Scientific Advisory Board makes sure that we are supporting only the very best research projects on the planet. The Spastic Paraplegia Foundation is an all volunteer run foundation. Our highly skilled staff, Scientific Advisory Board, Medical Advisors, CPA, Attorney, President, Board Members - all of us are working hard every day probono because we strongly believe in this cause. We know a cure is right within reach and we ask you to please join us in reaching by making a tax deductible donation.