Lisa Diane Danowitz is fundraising
Conquering The Cause - Hypophosphatasia
My name is Lisa Danowitz. I’ve been living with hypophosphatasia (HPP) for my entire life. It wasn’t until very recently, though, that I was able to actually put a name to it and finally start receiving treatment.
Throughout my life I have always battled issues ranging from very painful muscle and bone problems to severe periodontal issues. Though I had sought out the help from scores of medical professionals throughout the years, none were ever able to accurately diagnose the underlying issue. Therefore, treatments were ineffective, symptoms went unresolved and frustration was a constant.
At long last, I stumbled onto the SoftBones.org website. At Soft Bones I read stories that were very similar to my own experiences. I was able to talk with knowledgeable and caring people who made recommendations about getting the genetic testing required for a definitive diagnosis. It was at this point that we were also able to determine that my son Darren also had the disease.
HPP is a rare, progressive disease which presents differently in all who have it. Symptoms can range from broken bones, muscle pain, periodontal disease and in its most severe cases, unfortunately, can result in death.
Soft Bones, Inc., is a non-profit organization dedicated to helping people with HPP and their families. Because of the invaluable help and information I received from them, I now try to “pay-it-forward” so others can benefit like Darren and I have. In fact, I am now the NJ Region Lead where we regularly reach out to people and help them with information, education and empowerment.
This year I’m taking my involvement a step further and trying to raise money to help financially support the many worthwhile things that Soft Bones offers.
On Saturday, August 17, 2019, I will be hosting a walk that I’m calling “Conquer the Cause”, in which my family and friends will join me to walk the Route 52 Causeway, (commonly known as the 9th Street Bridge), connecting Ocean City, NJ to Somers Point, NJ. This event is to raise awareness and raise funds for Soft Bones.
All donations raised will be donated to Soft Bones, Inc. so they can continue their mission. With your help and support, I’m extremely grateful and confident that, together, we can help educate professionals as well as help people/families dealing with HPP.
Thank you again for your generous support to this very personal and worthwhile cause.
For more information about Soft Bones, Inc., US Hypophosphatasia Foundation, please reach out to me directly or click here: https://www.softbones.org/
Warmest regards,
Lisa Danowitz
Throughout my life I have always battled issues ranging from very painful muscle and bone problems to severe periodontal issues. Though I had sought out the help from scores of medical professionals throughout the years, none were ever able to accurately diagnose the underlying issue. Therefore, treatments were ineffective, symptoms went unresolved and frustration was a constant.
At long last, I stumbled onto the SoftBones.org website. At Soft Bones I read stories that were very similar to my own experiences. I was able to talk with knowledgeable and caring people who made recommendations about getting the genetic testing required for a definitive diagnosis. It was at this point that we were also able to determine that my son Darren also had the disease.
HPP is a rare, progressive disease which presents differently in all who have it. Symptoms can range from broken bones, muscle pain, periodontal disease and in its most severe cases, unfortunately, can result in death.
Soft Bones, Inc., is a non-profit organization dedicated to helping people with HPP and their families. Because of the invaluable help and information I received from them, I now try to “pay-it-forward” so others can benefit like Darren and I have. In fact, I am now the NJ Region Lead where we regularly reach out to people and help them with information, education and empowerment.
This year I’m taking my involvement a step further and trying to raise money to help financially support the many worthwhile things that Soft Bones offers.
On Saturday, August 17, 2019, I will be hosting a walk that I’m calling “Conquer the Cause”, in which my family and friends will join me to walk the Route 52 Causeway, (commonly known as the 9th Street Bridge), connecting Ocean City, NJ to Somers Point, NJ. This event is to raise awareness and raise funds for Soft Bones.
All donations raised will be donated to Soft Bones, Inc. so they can continue their mission. With your help and support, I’m extremely grateful and confident that, together, we can help educate professionals as well as help people/families dealing with HPP.
Thank you again for your generous support to this very personal and worthwhile cause.
For more information about Soft Bones, Inc., US Hypophosphatasia Foundation, please reach out to me directly or click here: https://www.softbones.org/
Warmest regards,
Lisa Danowitz
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