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 marlene@dtrf.org 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?



Dana Pounds

rsz dana pounds wedding 1What motivates your commitment to find a cure for desmoid tumors?

Science and philanthropy – and I hope that I embody both. Professionally, I am a marine biologist and co-founder of a nonprofit. Personally, I was diagnosed with my first of many desmoids in my right calf in 1999. For the next 9 years I tried everything from surgery to chemotherapy to radiation to RFA to alternative meds to you name it. In 2008 I had my leg amputated above the knee and have been living a wonderful life “desmoid free” – or so I thought. Just found out several months ago that “they” are back - now in my hip/pelvis area. At first was devastated - but now that I have my foot back under me again (HA HA) I can already see the blessings it has brought me. I am able to channel two of my passions - science and giving - into a cause that could not resonate more strongly with me – finding a cure.

What does The Desmoid Tumor Research Foundation mean to you?

DTRF = Hope, courage, comfort and support. I began raising awareness and funds for DTRF in 2007. I was one of the first desmoid patients to hold a fundraiser for DTRF through a 5K in Naples, FL, with another desmoid leg gal. In our first year, we raised over $15,000 for research and awareness about our disease! When I had my leg amputated I brought dry ice on surgery day to have my tissue samples sent to 2 hospitals that were working on coding the genes of the tumor mutations. Honestly, I never thought I would be a direct recipient of the benefits my small donations could create. Well, my tumors returned and now I am participating in a clinical trial for desmoid tumors. This trial would not be possible without the collaborative efforts of so many folks - and organizations like DTRF are invaluable tools that only recently became available. I am feeling so much better that I hope to run my first 5K race as an above the knee amputee at the Running For Answers race this fall!


Casey Sonke

IMG 3308What motivates your commitment to find a cure for desmoid tumors?

When I was told that the life expectancy for a patient like myself is only 5 years I looked at my doctor and asked "how can I change this outcome." My doctor at MD Anderson said "money needs to be raised so more research can be done to find a cure." I left that appointment and immediately knew what I had to do. I emailed Marlene Portnoy on June 10, 2013 and let her know my goal was to raise $50,000 before the race in September. I am happy to report that my goal was met and I can always look back knowing my efforts helped DTRF get closer to a cure.

What does The Desmoid Tumor Research Foundation mean to you?

DTRF is the light at the end of a very dark tunnel. When you google Desmoid Tumors the first site that pops up is the Desmoid Tumor Research Foundation. As a patient it is my lifeline. When I was first diagnosed in 2012 It provided me with the answers to so many of my questions and my families questions. I believe it will one day save my life as well as many of other desmoid patients lives.


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 Answers in 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

Rochelle MillerWhat 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.


Sherrie Gould


What motivates you to find a cure for desmoid tumors? 

I was diagnosed in 2006 with Desmoid Tumors in my low back/flank and since then, I have endured 5 surgeries to remove 3 tumors and have had two different types of radiation treatments.  So far, nothing has helped stop the tumors and I currently have a 4th tumor growing in my back.  It’s frustrating that there isn’t a single treatment plan that works for everyone and because of that, I have dedicated myself to raising awareness for Desmoid Tumors through social media, offering support in group settings to others dealing with this dreaded disease and have been fundraising for the DTRF for the past 2 years.


What does The Desmoid Tumor Research Foundation mean to you?

When I was first diagnosed, my general physician didn’t really know a whole lot about these tumors so I turned to the internet to search for answers and found the DTRF.  Over the past few years, there have been some major improvements in the research that is being done and new treatment plans are continually being developed, all due to funding by the DTRF.  DTRF is the only foundation in the world solely dedicated to finding a cure for Desmoid Tumors.  The DTRF gives me HOPE and I have NO doubt that one day, a cure will be found!