Faces of the Foundation

We are all faces of this foundation - patients, family members, friends, staff, volunteers, researchers and physicians.

Please help construct this page with your own stories and comments!

Email This email address is being protected from spambots. You need JavaScript enabled to view it.  with your paragraphs answering the questions below, and please include a photgraph.

 

1. What motivates you to find a cure for desmoid tumors?

2. What does The Desmoid Tumor Research Foundation mean to you?

Sera Snyder

Sera Snyder bw

What motivates your commitment to find a cure for desmoid tumors?

Since being diagnosed with a desmoid tumor four years ago, I have met more than half a dozen other women between ages 20 and 35 who are all fit and have desmoid tumors in their abs. I have always been an avid runner. To deal with the fear and knowledge that my tumor could return even after I had surgery to remove it, I picked up running again as soon as I was able. Running helped me feel stronger and gave me time to reflect. I used my love for running to fundraise for desmoid research by founding Running for Answersin Philadelphia, which has become the signature annual DTRF  fundraiser.

 

What does The Desmoid Tumor Research Foundation mean to you?

Starting Running for Answers to raise funds for DTRF helped me find more purpose in my life. It helped me discover that you can live your life with passion everyday, and even make a career out of it. My illness prompted me to ask myself questions like, am I living in line with my priorities? What is my mission in life? My answer was to find a job that might help others suffering from illness as I was. It gave me the confidence to leave my safe job in finance, and I now work as a professional relationship manager at the Cancer Treatment Centers of America.

Note: Sera's story was featured in an article in USA Today Online, January 13, 2012

Susan Zechmann

WBYC - Raising hope 2012 - 136What motivates your commitment to find a cure for desmoid tumors?

My son Matt was diagnosed with a desmoid tumor 3 years ago, and has undergone multiple surgeries and chemo treatments. Current drug regimes are borrowed from other cancers and have not effectively shrunk his tumor - we need to find drugs that will shrink desmoid tumors. Raising money to help fund research has transformed me from feeling powerless to being empowered. I have hope for the day my 28 year old son will return to a normal life, void of chemo treatments and regular doctor appointments.

What does The Desmoid Tumor Research Foundation mean to you?

DTRF has been a lifeline. After meeting the co-founders of DTRF and attending the symposium and 5K last year, this organization immediately became a support system for me and my family during this challenging time. The co-founders, the board, and everyone we’ve met through DTRF gives me hope for a cure!

 

Maddalena Casabianca- Reade

ang at lap 4 lifeWhat motivates your commitment to find a cure for desmoid tumors?

I started raising funds to support desmoid tumor research for my brother, Dr. Angelo Casabianca (picture to left) who had a nine year battle with desmoid tumors. He underwent years of medical treatment and multiple surgeries with subsequent complications leaving him with few options. The final attempt to remove his large desmoids required resection of his entire small intestine. He could no longer eat and was reliant on intravenous nutrition. Six months after his intestinal resection, he received an intestinal transplant, a rare and risky procedure. Seven weeks after his transplant, he returned home to resume his life as a loving father and husband. Unfortunately, one week later, at the age of 39, he succumbed to an illness that his weakened immune system could not ward off. I started the Lap4Life Foundation that raises funds for both desmoid tumor research and organ donation. Angelo proudly participated in the first annual Lap4Life event which was in his honor. We continue the event annually in his memory, and our community continues to walk on as a way to find answers and raise money for the research of desmoid tumors and organ transplant.

 

What does The Desmoid Tumor Research Foundation mean to you?

Lap4Life, which was started as a gift to my brother in order to raise money for his rare disease, has turned into my passion. I have been a runner most of my adult life. Through the Lap4life Foundation, I have found a way to keep my brother’s legacy alive and put my passion for running to a cause, the research of desmoid tumors and organ transplant. See www.Lap4Life.org. Our event is a day we celebrate my brother’s life and give people and their families who are battling these rare illnesses hope. Half of the proceeds we raise benefit the Desmoid Tumor Research Foundation. DTRF is the catalyst that transforms events like ours into answers and an eventual cure.

 

 

Rochelle Miller

What motivates your commitment to find a cure for desmoid tumors?

In 2006, my nephew Austin Conrad, age 10 at the time, was diagnosed with Aggressive Fibromatosis (Desmoid Tumor). In his first major surgery he had a 6 pound tumor removed from his right hamstring. Austin's doctor shared with us that there was little to no research for this disease since it was so rare. On our way home, Austin asked his mom Corinne Conrad and me (Rochelle Miller - Aunt) if we could do fundraising for research to help find a cure so no other children would have to go through what he was going through.

With the help of family and friends, in 2007 we started out with different fundraisers throughout the year with the biggest event being a walk-a-thon. Since then, our committee has grown and our major fundraiser has expanded into a “Fall Festival” event starting with the walk and offering other activities for all ages throughout the day. Our primary goal with each event is to bring awareness about this disease and raise funds for research while providing a fun filled day for everyone.

What does The Desmoid Tumor Research Foundation mean to you?

We learned about DTRF about 2 years ago and had the opportunity to meet and talk to the co-founders which provided us with insight into the organization and its focus. We were impressed with the organization as DTRF is not only looking for support through fundraising for research, but it's also an organization that has brought families together who may have felt alone but now have the support from others.

 

Lynne Hernandez

What motivates your commitment to find a cure for desmoid tumors?

As the Race Director for the Running for Answers 5K, I am connected to the desmoid community in such a positive and transformative way that truly makes me feel that I am making a difference. The RFA Committee and I design RFA to be a CELEBRATION of the stregnth of caregivers and desmoid patients.

What does The Desmoid Tumor Research Foundation mean to you?

Community and open conversation- surrounding the long journeys and surgeries and radiation... surrounding the healing and handholding.

I have worked and volunteered for a number of nonprofits, but I have never worked with an organization as passionate and robust as the volunteers and staff connected around DTRF.