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?

 


Shawanda Steele


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

My name is Shawanda Steele and my son Daniel Graham, 13 years old, suffered from a Desmoid Tumor in his right upper arm. We battled this thing for 4 1/2 years with different types of treatments, until it started to spread to the lymph nodes. Daniel had to get his whole right arm amputated and has to relearn everything with his left side because the right side was his dominant side. After all of this, my son is still holding his head up high and not letting anything bring him down. In fact, three days after surgery he came home and started playing a video game with his left side and said to me, "It seems like I have gotten better with one arm." How great is that?! I couldn't ask for anything more because I still have my son and his name fits him-- Daniel in the Lions Den, as I always tell him. So even though we hoped for the best, and ended up with having a major surgery, what motivates me to find a cure for desmoids is the fact that no one should have to suffer from this nasty thing and some people aren't as fortunate to resume life after such a traumatic surgery. If we can find something to help other people who are suffering from this illness and avoid major surgeries, then let’s keep pushing.

What does The Desmoid Tumor Research Foundation mean to you?

This foundation means a lot to me because when I felt like there was no one in the same situation as my son in the Cincinnati area, I was able to find and connect with different people online. Hearing some of the stories that people had to share made me feel at ease. We finally feel like we have something in common with others who are going through the same thing. I hope to continue to meet new people and share our story of a courageous young man.

 


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.

 


Lynne Hernandez

lynneWhat 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.

 


Christopher R. Miller

Chris MillerWhat motivates you to find a cure for desmoid tumors?

After being diagnosed with a Desmoid Tumor in my right calf over 3 years ago I was naive to think surgery would rid me of my disease but my tumor recurred less than a year after my surgery. Trial and error with a few medications led to an unexpected blood clot in my leg which I luckily survived. After a year of continued tumor growth I faced the possibility of amputation until I found a medication that has kept my tumor stable for about a year now. I feel blessed to live an active lifestyle with almost no limitations and have heard testimony from others, young and old, with more severe cases that limit or restrict an active lifestyle.

I feel a personal responsibility to become a voice for this disease now and in the future to help end the pain and suffering that many patients go through on a daily basis. After participating in the 2013 Pan Ohio Hope Ride, which brought together thousands of supporters and spectators and over 500 cyclists to ride from Cleveland to Cincinnati to benefit the American Cancer Society, I believe the same advocating can be done for Desmoid Tumors and I am motivated to take a step forward in making sure that happens by reaching out to fellow cyclists and athletes in general.

What does The Desmoid Tumor Research Foundation mean to you?

The DTRF is bringing people together to fight for a cause and even though I am fighting a disease I am not fighting it alone. When advocating Desmoid Tumors there is now a legitimate organization specializing in the disease and becoming the "face" for all areas involving Desmoid Tumors such as support, research, fundraising events, and donating directly to the cause. Additionally, DTRF gives me a sense of hope for the future and reassurance that research and support are increasing and answers will soon come.

 


Sherrie Gould

DTRFFotF

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!