Past Patient - Organized Events


Paint for a Purpose on November 19, 2015

Survivor Whitney Gramm hosted an evening of fun and creativity on November 19th at 6:30 at The Axis (prior Hancock Efree Church), 2 Fairview Lane, Hancock, MN.

Food, snacks and beverages were provided, along with a silent auction to raise funds for DTRF!

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Chalet au Moulin Arveyes Charity Evening on November 18, 2015

The Barrell family hosted a card and aloe vera sale in Switzerland on behalf of DTRF. Refreshments were served and they raised over $700 for desmoid tumor research! We are so grateful for their support!




PopUp Party on October 23, 2015

On October 23, Faith Zucker invited friends and family to a special event in her home featuring a silent auction including Browns memorabilia, photos, a house cleaning package, chiropractic package, free Great Big Home and Garden Show tickets, a free oil change, tickets to a rock event, baked goods and holiday baskets.

Tickets were $40 a piece and included music, appetizers and wine! Special thanks to Faith for fundraising over $1400 at this special event!

Check out pictures of the auction items here



Beer Pong Tournament on October 4, 2015

Brittany and Danielle Portnoy hosted their own Beer Pong Tournament at Gael Pub in Manhattan on Saturday, October 4th! With over 80 of their closest friends, they played and gave awards to the top winners. They can't wait to organize another event next year! 





Kutztown Fall Festival on October 3, 2015

Special thanks to the volunteers, planning committee and Austin's Fibromatosis Research Fund for organizing the Kutztown Fall Festival held annually at Kutztown Fairgrounds in Kutztown, PA, in support of DTRF. There were craft vendors, auction items, food, music and a car show.

We were so thrilled to join them, and we were so grateful for their support. 

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Third Annual Desmoid Dash is Minneapolis on September 19, 2015

Over 300 runners and walkers attended the Desmoid Dash this year in Mendota Heights, Minnesota, just outside of Minneapolis! This special event is held in honor of Matt Zechmann, but this year, he welcomed approximately 15 other survivors from the area to rally their teams! Thank you to the Zechmann family, the race planning committee, and everyone who participated- it was an amazing event, and we can't wait til next year! 

The Desmoid Dash raised over $88,000!

View pictures here!

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Tucking for Tumors on September 13

Special thanks to Kelly Mercier who is organized Tucking for Tumors on behalf of her survivor son who is 9 years old. This event raised over $1500 on behalf of the Desmoid Tumor Research Foundation. We are so grateful for their support!

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Sophie's Walk for Reed on Labor Day Weekend

Sophie hosted her 4th Annual Walk for Reed in honor of her father, Reed, who lost his battle against an abdominal desmoid in April 2010. This year, her walk took place on August 30th in Mission Hills, Kansas. 

Special thanks to Sophie for fundraising over $7,000 and donating these funds to DTRF! Take a look at some of her pictures below!

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Summer Market in the Swiss Alps on June 21, 2015

Special thanks to the Barrell family for holding a summer market on behalf of DTRF! 

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7th Annual Lap4Life on Saturday, June 20, 2015

Dr. Angelo Casabianca passed away due to complications with desmoid tumors, but his friends an family have found an amazing way to memorialize him. 

Congratulations to the Casabianca and Reade families for hosting another successful Lap4Life event!




Spring into Summer Festival on June 13, 2015 

The Spring into Summer Rock Festival took place Tubby's Nightclub in Duncannon, PA, in support of DTRF. It ran from 2pm- 2am, with a full roster of bands playing cover and original material. Lots of rock for a great cause! Great event!

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Austin's Fibromatosis Research Fund's Used Clothing Drive & Chicken Dinner on June 13 & 14, 2015 

AFRF held their annual clothing drive and chicken dinner this year to benefit DTRF! We are so grateful for their ongoing support, and we congratulate them on another successful event!

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Doubles for Desmoids in Atlanta, GA on April 29, 2015

The Doubles for Desmoids Tennis Tournament took place on April 29th at the Bitsy Grant Tennis Center in Atlanta, GA. Because of the rain, participants were not able to play tennis, but they did raise over $14K at their brunch and silent auction. Amazing effort! Special thanks to the Simpson and Sonke families! 

View pictures here!



St. Patrick's Day Party in Chicago

Erin O'Boyle and her husband have been holding annual St. Patrick Day fundraisers in honor of DTRF for the past 10 years. Their parties have included friends both old and new, people who have traveled from other states or from just across the street and have been held everywhere from their first apartment together in Chicago, to their house in the suburbs.

View their pictures here!

Vendor Bingo hosted by Austin's Fibromatosis Research Fund on March 28, 2015

Special thank you to Austin's Fibromatosis Research Fund for all of the hard work they do to raise funds for DTRF! At their Vendor Bingo event, AFRF raised over $3,000!


A Night for the Fight on February 21, 2015

The Main Line Chapter of the Board of Associates for Fox Chase Cancer Center hosted their first annual Night for the Fight formal event in the Philadelphia area on 2/21/15. The event featured an evening of dinner, dancing, music, and philanthropy, including live music, a silent auction and open giving. The silent auction will featured items such as sports tickets and memorabilia, spa and pampering packages, spectacular mini-getaways, and many more!

This special evening took place on Saturday, February 21, 2015 at Merion Tribute House. The address for the Merion Tribute House is 625 Hazelhurst Avenue, Merion Station, PA 19066 from 6- 10pm.

Special thank you to Conner Catering, for donating their catering services. DTRF was a beneficiary of this event.



2nd Annual Desmoid Dash in Minnesota on October 11, 2014

Congratulations to the supporters, volunteers and finishers of the 2014 Desmoid Dash in Medota Heights, MN!

With approximately 300 finishers, this race was extremely successful, raising over $88K in support of DTRF! Read more about Matt Zechmann's personal efforts to raise funds and awareness for desmoid tumor research here

Check out pictures of this special event here and follow them on Facebook here!

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Cornhole Tournament in North Carolina on September 26, 2014

On September 26, 2014, desmoid tumor survivor Char Dumas hosted a cornhole tournament at her home in Charlotte, NC to raise funds for the DTRF. The event was attended by over 75 very generous adults and children. As you can see from the picture, a good time was had by all. The event raised more than $4000 for desmoid research.



Kutztown Fall Festival on September 20, 2014

This special event was held at Kutztown Fairgrounds in Kutztown, PA, in support of DTRF and Austin's Fibromatosis Research Fund. The Fall Festival will included a Car & Motorcycle Show; Craft & Home Show booths; Food & Homemade Bake Sale; Children's Entertainment & Crafts; Carnival Games; a Raffle, Silent Auction and more!

Congratulations on an amazing event, raising over $20,000! We are so grateful for your supporting our research and patient support efforts!


Fundraising Dinner in Breyate, Switzerland on September 20, 2014

Congratulations to the Barrell's for organizing a lovely dinner in the Swiss Alps in support of DTRF. The function raised over $20,000.

On arrival at Bretaye, there were canapés and an aperitif outside. The second course of the evening was sit down meal inside prepared by Cookie chefs, followed by dessert. Beer, wine and soft drinks were included.

They also held a raffle and an auction after the meal.

All donations and funds from ticket sales are support research by DTRF.

View pictures here!


Beef N' Beer on behalf of RFA Team Desmoid Destroyers on September 6, 2014

A special thank you to Anthony Fiore and the Desmoid Destroyers for hosting a BEEF & BEER at the Holy Savior Club (436 E.Main St. Norristown, PA. 19401) on Saturday, September 6th from 6pm-11pm. The menu featured roast beef sandwiches, beer (Coors Light), spaghetti and homemade Italian meatballs, tomato pie, dessert and coffee. 

Tickets were $30 per person, and 50/50 tickets were $5 each. They had the most amazing raffle baskets featuring spa products, a tailgating basket, a firepit with s'more ingredients, a coffee basket, a pasta basket, and many, many more! Pictures here!

Thank you for your efforts, Desmoid Destroyers- it was a lovely gathering!


Sophie's Walk for Reed on August 20, 2014

Sophie hosted another walk, honoring her dad who lost his battle with an abdominal Desmoid in April of 2010. Her 3rd annual walk took place in Mission Hills, Kansas, on August 20th and raised just over $5,000! Check out pictures here!

We congratulate Sophie on her great conviction in memorializing her dad and supporting desmoid research. Thank you, Sophie!

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I LOVE SOMEONE RARE- A Celebration of Warriors on August 9, 2014

This special event featured speakers from the Huntsman Cancer Institute on FAP and desmoid tumors in the afternoon, and music and celebration in the evening.

Located at Boothe Brothers Performing Arts Center in Spanish Fork, Utah, this celebration brought together desmoid tumor and FAP survivors!

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Bowl for a Cure! on behalf of Christian Sidebottom on July 26, 2014

Congratulations to the Sidebottom family for raising $8,000 during their Bowl-a-thon at Prescott Plaza Bowl in Prescott, AZ!

Each bowler was encouraged to find sponsers (by July 19th) to commit to a flat donation. They sold raffle tickets and had some great prizes:

  • 2 box seats for the Phoenix Suns including food, wine and beer
  • a BBQ Grill
  • an ipod
  • a round of golf for 2 people and more!

Read an article about Christian Sidebottom's journey with desmoids and his effort to raise funds.

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Lap4Life in Newburgh, NY on June 21, 2014 in memory of Angelo Casabianca

The 6th annual Lap4Life is a 4 mile run/ walk and Kids' Fun Run in celebration of Angelo Casabianca's life and legacy. This year, the event had over 1,000 attendees! View pictures of the event here.

Special thanks to Race Director Maddalena Reade for donating a portion of the funds to DTRF. Find more information about this special race here.




Chili Cookoff on June 21, 2014 in support of DTRF on behalf of Giuseppe Pisani

The neighbors of Chetland Road gathered to celebrate Giuseppe Pisani, a very young desmoid survivor! Special thanks to this community for their support of the Pisani family and DTRF!

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Clothing Drive and Chicken Dinner on June 14, 2014 on behalf of Austin's Fibromatosis Research Fund

Used Clothing Drive 2014


Simply Twisted Frozen Yogurt Fundraiser in Blue Bell, PA, on behalf of RFA Team Desmoid Destroyers on June 7, 2014

Family and friends stopped by Simply Twisted on June 7th to grab dessert and say hi to RFA Team Desmoid Destroyers!

View pictures here!

Simply Twisted

Phoenixville Bake Sale on May 3, 2014

At the Phoenixville Farmers' Market on May 3, 2014 from 9am- 1pm, there was a special bake sale and fundraiser for DTRF. RFA Team Mighty Max's Angels raised over $350 on behalf of the Foundation! Thank you to Kathy, Max, and Edie Veeck who ran the bake sale. Also, they were so happy to welcome support from RFA Team Desmoid Destroyers!


Lawson's Finest Liquids 6th Anniversary fundraiser for DTRF on April 19, 2014

Lawson's Finest ( hosted 3 events on April 19, 2014, celebrating six years of brewing and raising funds for a cause close to our hearts — The Desmoid Tumor Research Foundation. This event raised over $5,000 for the Foundation!

The event took place at the Valley Players Theater, 4254 Main St, Waitsfield, VT.

The Beer Lovers Market from 2-6 pm featured free admission with bottle sales, draft beer, Lawson's merchandise, and a selection of local foods and goods from Gracie's Tamales, Nutty Steph's, Green Mountain Twisters, Mt. Mansfield Creamery, Gizmo's Pickled Plus, and more! 

The Beer Lovers Ball took place from 7-11pm (ages 21 and over only), and featured live music from The Grift and a cash bar with eight varieties of Lawson's Finest on tap. Admission was $35 per person and included one draft pour in a souvenir Lawson's tulip glass and a buffet dinner from the Mad Taco. Tickets were available at two locations — The Mad Taco in Waitsfield and The Warren Store in Warren. 

Check out pictures of this special event here.



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First Annual Desmoid Dash on October 12, 2013 in Mendota Heights, MN

The 1st Annual Desmoid Dash was a huge success with over 300 runners/walkers and over $52,000 raised for DTRF (Desmoid Tumor Research Foundation)!  The efforts of the multi-talented Desmoid Dash committee of 20 somethings, headed up by Matt Zechmann's younger sister, Nicole, were rewarded with uplifting energy and support.  The day started with a few words from family friend, Don Maietta, one of Matt's oncologists at the Mayo Clinic, Dr. Gonsalves, and concluded with a heart-felt thank you from Matt and Nicole.  Then the 300 runners/walkers were sent on their way on the 5k course - the day ended with a celebration with music, prizes, and food.

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2013 Harvest for a Cure

Check out the flyer for Harvest for a Cure, which took place in Chesapeake, VA on September 29th! With over 200 attendees, the event was a great success, with family and friends meeting their goal of raising $3,000! Pictures here!



2013 Sophie's Walk for Reed

Sophie began this walk last year as a way of honoring her dad who lost his battle with an abdominal Desmoid in April of 2010. Her 2nd annual walk took place in her neighborhood, Mission Hills, Kansas, on September 1st and raised just over $3,000! It was attended by neighbors, friends, parents and family, as well as classmates at Pembroke Hill School and her dad's class of 1983.
This year her small committee made tshirts and enlisted a few sponsors to help underwrite the up front costs. She plans to continue the event through high school. 

We congratulate Sophie on her great conviction in memorializing her dad and supporting desmoid research. Thank you, Sophie!

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2013 Kutztown Fall Festival

This special event, on September 21, 2013, was held at Kutztown Fairgrounds in Kutztown, PA, in support of DTRF and Austin's Fibromatosis Research Fund. The Fall Festival included a Car & Motorcycle Show; Craft & Home Show booths; Food & Homemade Bake Sale; Children's Entertainment & Crafts; Carnival Games; a Raffle, Silent Auction and more! 


FALL FEST AD 7.10.13



Evening at the Wembley Club

Benefitting the Desmoid Tumor Research Foundation (DTRF)
August 24, 2013 from 5:00 pm – 10:00 pm

Please join Faith Dalton for a fun filled evening at the Wembley Club in Chagrin Falls, Ohio! Located just 40 short minutes from Cleveland, Ohio the Wembley Club provides a family friendly environment on 10 beautiful acres.

Your ticket includes:
Wine Tasting, for our young (40+) and younger (21+) friends
Swimming will be enjoyed by our youngest (2+), younger (21+) and young (40+) group
Tennis serving the young (40+), younger (21+) and youngest (recommended 7+) crowd
Appetizers and BBQ- themed dinner
A cash bar serving snacks and adult beverages
Silent auction              ~                 Reverse raffle              ~               50/50

Tickets are considered 100% tax deductible donations!
$35/per person              ~          $50/per couple              ~          $75/per family

Payment, as well as donations, are now being accepted here.

Want to pay by cash or check?  No problem!  You can pay at the door or mail payment directly to DTRF, including “Faith Dalton” in your check memo!

DTRF, P.O. Box 273, Suffern, New York 10901More about Faith’s journey with desmoids here- and a special thanks to Lara Talevski & Stuart Watson!




First Annual Utah Survivor Celebration on August 10, 2013

At the Utah Survivor Celebration, DeAnn Sorenson and her volunteers focused just as much on the support of getting together as they did the fundraising. DeAnn states, "It was fantastic to meet each other to share stories and support. We had 5 desmoid survivors, 2 desmoid/FAP survivors and 2 FAP survivors." They raised over $1200 for DTRF! It was a great event and they look forward to making it an annual event!


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2013 Lap4Life in Newburgh, New York

June 22, 2013 marked the 5th annual Lap4Life event on Chadwick Lake in Newburgh, New York.  The event drew over 1,000 enthusiastic participants in a 4 mile run, walk and kids' fun run.  Organized by Maddalena Casabianca-Reade, this event raises research funding and awareness for demoid tumors and organ transplants.   

Eleven years ago, at the age of 30, Maddelena's brother Angelo was affected by desmoid tumors. After nine years of medical treatment and multiple surgeries with subsequent complications he was left with few options.  A final attempt to remove his large desmoid required resection of his entire small intestine and an intestinal transplant, a rare and risky procedure.  Unfortunately, after the transplant, he succumbed to an illness that his weakened immune system could not ward off.

The annual Lap 4 Life keeps Angelo's memory alive and helps others avoid similar suffering by funding research for a cure.  A thousand thanks to Maddalena for her valiant efforts in putting on this incredible event every year!

Check out a few pictures from the event here! Check out all of the Lap4Life galleries here!


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2013 Annual DTRF Golf Classic in Mahwah, NJ 

On June 17, 2013, Richie and Nan Klein held a golf outing fundraiser for DTRF. It was a beautiful day at the Apple Ridge Country Club in Mahway, New Jersey. The 130 golfers vied for hole-in-one prizes of a Maserati, a Ford Mustang and a $50,000 hole. There were also many great raffle prizes and silent auction items. Many thanks to Nan and Richie Klein for their efforts to support research!

Check out more pictures here!


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2013 Live Without Limits Chicago Fundraiser for Desmoid Tumor Research Foundation

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Patients, family and friends came together to support desmoid tumor research. 

A special thank you to Beth and Drew Bialko in helping DTRF find a cure for desmoid tumors. To learn more about Beth and Drew, watch their story HERE.

May 14, 2013 from 6- 9pm

Mastro's Steakhouse, 520 N Dearborn St, Chicago, IL 60654

Special Guest: Marlene Portnoy, Executive Director for DTRF

Wine and Hors d'oeuvres provided by Mastro's.

Deluxe raffle items and silent auction.

Host committee: Beth Bialko, Drew Bialko, Kimberly Greenberg, MaryJane Gillespie, Christine Kurban, Kim Lichtenstein, Gina Marotta and Erica Strama


2013 Bake Sales in the Philadelphia area supporting Running for Answers (RFA) Team, Mighty Max's Angels!

The Veeck family held bake sales in Narberth and Phoenixville on May 4, 2013. Both bake sales raised $850.00 for DTRF! Click here for a picture of Mom, Kathy, and her mighty survivor, Max. See Max below!

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made in the usa challenge recognizes DTRF

Sarah Mazzone believes that change starts at home. That's why she's recommended a number of nonprofits that she deems fit to support.

Check out her homemade site here!

Sarah states, "As a Registered Nurse, I have cared for patients with many types of conditions. So I was shocked when my good friend Kathy shared that her son Max had been diagnosed with a rare and aggressive tumor I had never heard of called a desmoid tumor. One of only a few children in the US diagnosed with such a tumor, her son at just age three has undergone countless tests, medications and surgeries to treat this condition."

Almost immediately after the diagnosis Kathy connected with the Desmoid Tumor Research Foundation, creating a running team for a local race and raising thousands of dollars much needed to research this difficult to manage tumor.


2012 D-Day for Desmoid- Raising Hope in St. Paul, Minnesota

S eptember 21, 2012-  A fundraiser called Raising Hope took place at the White Bear Yacht Club in White Bear Lake, Minnesota. The event was a huge success - $200,000 was raised!

Three women proposed the idea of a fundraiser for Matt Zechmann and Katie Hoel Schaefer, two desmoid survivors, to raise money for desmoid tumor research. It was a small idea at first. Just a few art objects at an auction but the momentum grew. Friends were asked if they might donate to the auction. Goods, services, dollars began to flow. The committee grew and the unique talents of networking, fundraising, organizing began to take shape. Invitations were designed, guest lists formed, menus, auction items, set up organized. In our wildest dreams, $200,000 was not in our vocabulary. But 250 guests attended a night that was later described as magic. Katie and Matt told their stories.

People listened. The goods that were so generously donated were even more generously paid for. There are not enough thank yous to go around. We did indeed Raise Hope for a cure!

Check out the rest of our photos here!

Contact  or  with any questions about this special event.

See invite here.


Fundraiser by the Pittsburgh Poison All Stars!

The Pittsburgh Poison AllStars decided to put together a fundraiser for Maura Carrozza and DTRF! A special thanks to Tracy (the owner of the gym where Maura dances), and the Carrozza family!


Alison Seigel's Bat Mitzvah Project

Marlene Portnoy's niece chose The Desmoid Tumor Research Foundation for her tzedakah project for her bat mitzvah. She asked that all of her guests make a small contribution to the foundation in her name!


Nicole Kulchar's Wine Tasting

To raise awareness and to help increase donations for the DTRF, Nicole decided to host a wine tasting fundraiser at a local wine bar (A Taste of Wine). The wine bar offers discounts on cases of wine, making the fundraiser affordable for me. They recommended that 1-2 people sponsor the wine tasting and then all profits from the event went 100% towards the DTRF. She created a public facebook page and passed out flyers. Tickets were $25 a piece since Nicole's company matched donations of $25 or more. In addition, she had several baskets donated for a silent auction to help raise additional funds. It was a low-cost way to drive awareness and to collect donations. For those who couldn't join, she advertised online donations.


2012 FUNdraiser at Sharky's in Houston TX in partnership with Austin's Fibromatosis Research Fund

On, September 29, 2012, 10% of each bill was donated when you mention the Fundraiser or Pilar!

Download flyer here.


NYC to Montreal in honor of Jeanienne Palmer

Aaron Saucier cycled from NYC to Montreal, taking roughly a week, in honor of his friend, Jeanienne Palmer. Aaron's goal was to raise $2,000 for DTRF- and he achieved it through this special ride. Aaron also made a special trip down from NYC to Running for Answers in 2012.


2012 Cupcake Wars in West Norriton, PA

September 27, 2012- Dia Doce gourmet cupcakes visited the Quest Diagnostics West Norriton facility as a fundraiser for the Desmoid Tumor Research Foundation. Dia Doce uses all-natural, sustainably sourced and local ingredients, and this attention to quality is obvious as soon as you try one of their delicious cupcakes. They arrived with 300 cupcakes featuring six mouth-watering flavors: Pecan Pie, S’mores, Blueberry Pancake, White Velvet, Chocolate Truffle and Chocolate Cookie Dough. They looked as good as they tasted, decorated with swirls of buttercream, maple or marshmallow frosting. All 300 cupcakes were sold out within 45 minutes! We are so happy that they have agreed to be part of our Holiday Vendor Event on December 13th! Dia Doce is the talk of WN!

Dia Doce is a past winner of the Food Network’s Cupcake Wars and they have also been voted Best Cupcake by both Best of the Main Line and the Philly Hot List. They do not have their own shop, but instead sell their goods out of their cupcake truck or other local stores. Check out their website at or visit them on Facebook for a list of their scheduled stops and a list of stores which carry their cupcakes.


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2012 Kutztown Fall Festival in Kutztown, PA

September 22, 2012- This special fall festival, located between Reading and Allentown, Pennsylvania featured a Walk for a Cure; Live Entertainment; Car and Motorcycle Show; Craft and Home Show Booths; Food & Homemade Bake Sale; Children's Entertainment CarnivalGames; Children's Crafts; Raffle and Silent Auction.

Check out more pictures for this special event here! Also, check out the news coverage!

Ray McClelland from "Car Warriors" supported this event- see his flyer here!



Sophie's Walk for Reed

A walk was held in Mission Hills, Kansas on Saturday morning, September 1, 2012. The fundraising event, benefiting the Desmoid Tumor Research Foundation, took place despite the dreary conditions provided by the remnants of hurricane Isaac as it slowly made its way across the Midwest. Sophie’s father, Reed Hickok, lost his battle with an abdominal desmoid on April 1, 2010. His courageous battle inspired many of his friends, family, classmates and co-workers to gather and walk in his memory and offer contributions to help support research to the DTRF. Sophie and her friends helped to raise over $3000 in this inaugural effort and have hopes of making it a yearly event … Rain or Shine!




Bake Sale

Quest Diagnostics DTRF Bake Sale for 2011 Running for Answers

Quest Diagnostics fundraising activities have raised over $1,700 for RFA with a series of events.    One of the events the Collegeville QuestCares and the "Robin's Runners" team sponsored a bake sale that raised over $500.







The Fourth Annual 2012 Lap4Life Chadwick Lake Race / Walk / Kid's Race

Check out more event pictures here!

For those that missed Lap4Life on CBS, here is the link.






NJ Walk for DTRF

Catalina Marketing 5k Run/Walk in Saddle Brook NJ

Catalina Marketing held a 5K Run/Walk Fundraiser to benefit DTRF at Saddle Brook Country Park in New Jersey on June 1st, 2011. With 26 participating runners & walkers, they Successfully raised over $2000!




Auction of Iditarod autographs Last Great Race on Earth

Dancing with TeachersBeing an Alaskan, like may others, I follow the Iditarod. From Anchorage, in south central Alaska, to Nome on the western Bering Sea coast, each team of 12 to 16 dogs and their musher cover over 1150 miles in 10 to 17 days. It has been called the “Last Great Race on Earth” and it has won worldwide acclaim and interest. 

Since people outside of Alaska like it too, I thought there might some interest in some Iditarod stuff. Since I am an autograph collector, I figured… why not… maybe I’ll auction some Iditarod autographs. The first group of items I listed on  eBay were from my collection. Then I thought I would try to get every musher form the 2011 Iditarod, so I bought tickets to the Musher Banquet in Anchorage Alaska. I got two things signed by EVERY SINGLE MUSHER (62 racers) of the 2011 Iditarod for the fundraiser.

Drink To Defeat Desmoids

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Dancing with Teachers for DTRF

Dancing with Teachers

My name is Cindy Kaufer and I was diagnosed with an intra-abdominal desmoid tumor in June of 2006. I have been undergoing chemotherapy for 3 years now which has been very successful in controlling the tumor. Every year my boyfriends school where he is a teacher has a fundraising event called "Dancing with the Teacher". Student choose teachers to participate in the event with them and they make up dance routine and perform in front of students, faculty and parents. The admission was 5.00 per person. This year $1500 was raised and dontated to the Desmoid Tumor Research Foundation. Attached you will find a DVD of my boyfriend and his group performing the "winning" routine.

Watch Video now!


A Special Kind of Fundraiser given by the Mendel's

During May and June of 2012, Leslie Mendel and her family worked hard raising money to find a cure for desmoid tumors, from which her son Daniel suffers. You see, instead of inviting people to another lavish event, the Mendel’s asked everyone to stay home and instead send a contribution. Thank you to the Mendel family!


Art Show to Contribute to DTRF in Virginia

Vestiges and Conjurings
March 11 - April 4, 2010

Assemblages by Lynne Parks and Collages by Chris Siron will be at The Zigzag Gallery in The Plains, Virginia. The show runs March 11 - April 4, 2010. The opening reception will be March 13, 4:00 p.m. to 6:30 p.m. The Artist's Talk will be held on March 21st at 1:00 p.m.

Lynne will talk about her experience with desmoid tumors and the impact of the disease on her artwork. 5% of sales will be donated to the DTRF. The gallery owners will accept donations throughout the course of the show and literature about the DTRF will be available.


First Annual Power Family Fundraiser in Portsmouth, NH

First Annual Power Family Fundraiser for the Desmoid Tumor Research Foundation, in honor of Kristen Power. The event was held on May 8, 2010 at 7 p.m. at The Red Hook Brewery in Portsmouth, NH.

Family Fundraiser   

March 29, 2010 Fundraiser in Bel Air, Maryland

15 % of the total sales at The Tower between 5:00—9:00 pm will be donated to DTRF. Download Poster


Beef & Beer Fundraiser for DTRF

Claudia Gomez is 26 years old and grew up in the Philadelphia area. Claudia was diagnosed with FAP (Familial Adenomatous Polyposis) in high school and with over 200 polyps in her colon, Claudia had a colectomy in her junior year. In her senior year of college, Claudia developed desmoid tumors in her abdomen, and now has a stent in her ureter which must be replaced every 3 months. For the last year, Claudia has responded well to Gleevec, and the tumors have remained stable. In November, Claudia's friends and family held a "Beef & Beer" fundraiser (a Philadelphia tradition) for DTRF.

The committee worked hard to solicit donations from people and businesses in the area, as well as to sell tickets for the event. Pat Ciarrocchi, a Philadelphia newscaster and step-mother to a young man with a desmoid tumor, was the guest auctioneer and raised the profile of the event. The night was a huge success, with close to 150 in attendance and a full array of raffle baskets and auction items. Everyone had fun, and as one neighbor commented, "We have wanted to do something to help for so long, and this was a great way to do that." All in all, the event raised $10,000, double the original goal of Claudia's friends and family.

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2009 Cirque du Survivor (CDS) Fundraiser

Sunday November 1st was an afternoon of circus magic to support DTRF and help us celebrate survivorship!!

Event Information and Photos




The Rockin' fundraiser for DTRF

The Rockin' fundraiser for DTRF on June 6th in Basking Ridge, New Jersey was a tremendous success with checks made out to DTRF totaling $9,810.00.

This money was raised thanks to 6 families who worked endlessly to plan this wonderful evening in less than 6 weeks. Thanks to Charles and Lisa Gatto, Greg and Jill Howard, Eric and Kim Lindsey, Stephen and Jennifer Mueller, Lee and Karen Lizakowski and Richard and Eileen Marano, everyone had a wonderful time as they were entertained by two bands and participated in a silent auction and live auction, featuring our MC Jonathan Behrins.

Several sponsors generously contributed to the event . Some of the many exciting auctioned items included a week at Walt Disney World Resorts and a signed guitar by the members of Bon Jovi.

Jim Farley and other members of the Liberty Corner Firehouse provided the perfect venue. Food and drink were supplied by Gary's Wine and Marketplace and Cioffi's restaurant. I am so grateful to my friends and community for supporting the fundraiser and helping to bring awareness to this cause.

Christine Pizzi

Golf tournament in memory of Joan Holman

pic 3golf tournamentOn June 15 of this year our friend and golfing buddy passed away from a desmoid tumor.  Joan had golfed several years with a group of ladies every Tuesday morning during the summer months.  This group has grown over the years and Joan was always present with a friendly smile and words of encouragement for the less experienced golfers.  In her memory a golf tournament was held at Indian Lake golf course on Sept 29   in Halifax Nova Scotia to raise money for the foundation.  Both golfers and nongolfers played 18 holes of golf and participated in a putting contest.  A dinner and prizes followed this. We were able to raise $2200.00 for Desmoid Tumor Research. Plans are now underway to have a tournament again next year and we hope to raise even more money.

Nancy Boland and Jeannette Laba

DTRF 5k Run raised over $14000

5KRunWalk 2006 (1)Dana and I felt the need to do something to make a difference and we joined efforts to do the First Annual 5K Run/Walk.  We decided on making this a tradition and doing it once a year.  Both of us work a tremendous amount and undergo treatment so this was not easy, but it was just so important to us that we made it happen!!!  We had an incredible amount of participation from local business, family, friends, coworkers, and the community. We were interviewed live by a local news channel. We heard tons of compliments about the organization of the 5K Run/Walk and how it was the best...This was sooooo nice to hear as it was only our first one!  Together we raised about $7,000 and with the anonymous donor that matched it was a total of about $14,000!!! It was such a fantastic feeling for the both of us that is still difficult to explain, but WOW!!!

Jennifer Alvarez
Dana Lawson


Running a half marathon for DTRF

In December 2008, 26 year old, Sera Snyder was diagnosed with an abdominal desmoid tumor.  After surgery to remove the desmoid with margins, one of Sera's main goals in recovery was to run a half marathon and raise money to support the Desmoid Tumor Research Foundation.

After months of difficult recovery, Sera reached her goal on September 20, 2009 by running the Philadelphia Distance Run and raising over $5,000 for DTRF!  To make the victory even sweeter, Sera ran PDR faster than the previous two half marathons she ran in 2008, pre-desmoid surgery!  She is proof that, in fact, these tumors can make us stronger - in body and mind!

Click for more details and larger images.


Women's Sertoma Club of Venice


Left is Sheila Kaufer, a member of the Women's Sertoma Club of Venice.  The Club made a $250 donation to the DTRF for the second year in a row.  At right is her daughter, Cindy Kaufer, who has had an intrabdominal desmoid tumor that was diagnosed 3 years ago.  Cindy is a patient of Dr. Sein Aung at Franklin Square Hospital Center in the Baltimore area.  Her tumor is responding well to the therapy.

July 2007 Photo Exhibit and Fundraiser

The first public exhibit of photography by h. Ford Pierson was held in Carmel Valley, California, on Sunday, July 15, 2007.  Created as a fundraiser for the Desmoid Tumor Research Foundation, the presentation was held on a beautiful, sunny afternoon at the prestigious Bernardus Lodge on the Central Coast of California.  About 100 people stopped by throughout the day to enjoy incredible photographs as well as exceptional Bernardus Vineyard wines and delicious food.  Quite a few pieces were sold, as well as several direct donations made to the foundation, raising about $400 from the afternoon.
Hugh Pierson, the photographer and a desmoid tumor patient, will continue to donate a portion of his art sales to DTRF.  His work can be viewed and purchased at
It is critical that we continue to support the ongoing research to cure this disease.  Simply by adding the DTRF website to the invitations and presenting information at the event, with envelopes and donation cards (which we printed), we were able to educate and encourage continued donations by the public. 


Successful Letter Writing Campaign

I have been a desmoid patient for 25 years and have had two tumors. I have had two inpatient and dozens of outpatient surgeries, 6 weeks of radiation, three months of chemotherapy and a year and a half of potent anti-inflammatory treatment all told. I have not had any luck in treating the current inoperable tumor in my shoulder.
When I discovered that the Desmoid Tumor Research Foundation (DTRF) had been created, I was overwhelmed with emotion, a mixture of gratitude and hope. I wanted to contribute somehow and my own financial situation being what it is after so many years of medical bills, well, you can imagine. So I took a tip from the fund-raising ideas given on the DTRF's website and drafted a letter.
I sent this letter to everyone in my address book, family and friends alike.
Within a matter of weeks I had collected over $2200, an amount that would be matched by a corporate donor. I found that when people learned the details of this disease and its conditions and how they exist for a few million of us, they wanted very much to help. Again, my heart is full of gratitude and hope. Making this effort has given me such a boost of morale and energy, to quote the DTRF's own Jeanne Whiting, "It turns you from a victim to an advocate, and is very empowering!" I will continue to do what I can to raise money to fund research for a cure.

Lynne Parks