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Debbie Soprano
fundraising stats:
18%

Raised: $895 | Target: $5,000 | Left: $4,105

  • Contributions$895
  • Donors7
  • Comments2
Dear Family and Friends,

Four years ago I finally learned some of the answers to the mysteries surrounding the unusual number of cancer diagnoses that have touched my family.

My mother, my uncle, both of my sisters, and just recently my 11 year-old niece were diagnosed with Li-Fraumeni Syndrome (LFS), a very rare, inherited genetic disease that predisposes you to nine different soft tissue cancers in your lifetime. I tested negative. Inevitably, there is more than an 90% chance of an LFS patient having at least one or more of these nine cancers in their lifetime. Plus a 60% chance of passing on the gene to your children. Most individuals never even know that they are carriers of this disease until multiple members in their family are affected and a doctor can connect the dots and suggest specific genetic testing.

In the 40+ years since the founding of this rare disease there has been little to no medical advances. In 2010, my sisters and I attended a conference at the National Institutes of Health in Washington, DC (NIH) where doctors and LFS patients came together for the first time. At the end of the conference, a group of patients and caregivers pro-actively collaborated to form the Li Fraumeni Syndrome Association of which I am a proud founding member. There are currently 3,000 known LFS patients globally –– although there is strong belief that many more exist when genetic testing is offered to families with history of multiple cancers.

Our first initiative after starting the 501c(3) not-for-profit process was to connect our global community through a world-class online presence — a website. We have since provided family support resources, conducted webinars, established two medical research funds and organized an international conference to continue collaboration between physicians and patients. We are now positioned to actively pursue the necessary fundraising dollars required to invest in the science at our LFS Centers which will, in turn, allow us to make significant advances in healthcare and patient awareness, family support, and bring this disease to the forefront for patients, researchers and clinicians alike.

In order for our LFS organization to have a greater impact on the families affected by this disease, I am asking for your help. LFS may only be in its infancy in terms of medical and patient awareness — but it is only too real for me, my family, and 3,000 other families. The only way to get to the next level is with your support.

There are two opportunities for giving. Our first online fundraising event is a Virtual Walk. You will be directed to my fundraising page where you can participate in this inaugural community event. If you prefer to send a contribution please mail your donation to:

LFS Association
P.O. Box 6458
Holliston, MA 01746

I deeply appreciate ANY contribution of ANY size. No contribution is too small! If you have any questions please call me –– I always love hearing from you!

With my heartfelt gratitude,

Debbie