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.
We are excited that Giving Tuesday is coming up soon. It is a once a year event and is a perfect accent to the holiday season. Unbeknownst to the commercial world, the holiday season is not about who gets more for me, me, me. It is about that special feeling you get when you know you have really helped out someone you care about or love. It is knowing that the dollar you give today is going to blossom into a million dollars worth of relief from suffering for the people with HSP and PLS. Welcome to Giving Tuesday and we Thank You for your consideration.
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.
We operate out of the strength of our community, caring friends and sponsors. Your help makes a difference! Our volunteers give many hours of their time annually, and the opportunities to help are as varied as our helpers. Read more.