DTRF Past Events

2011 Running for Answers, Patient Symposium & Brunch

Information and pictures of Patient Symposium, Running For Answers

Wine tasting in Piermont, NY on May 26th

Information and more pictures of Wine Tasting, Running For Answers and Brunch

2010 Running for Answers, Patient Symposium & Brunch

Information and pictures of Patient Symposium, Running For Answers and Brunch

2010 No Gala Gala

See Benefactors Wall of those supporting the No Gala Gala

DTRF's Annual Dinner Fundraisers are a success!

Our patient symposiums and dinners have been a huge success! I think everyone would agree that the patient meetings not only gave everyone the opportunity to exchange experiences but was extremely informative. The dinner events that followed helped raise money for continued research.

Information and pictures about Fundraisers from years 2009  2008   2007  2006

Patient Organized Past Events

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.

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

Being 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. more

Drink To Defeat Desmoids

Dancing with Teachers for DTRF

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

Leslie Mendel and her family are working 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... See Page 4 of THE JEWISH GEORGIAN May-June 2010 issue for more details.

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.

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.

2009 Cirque du Survivor (CDS) Fundraiser

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

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

On 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.

See Photos of the Golf Tournament

Nancy Boland and Jeannette Laba

DTRF 5k Run raised over $14000

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!!!

See Photos of the 5K Run Walk

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 on Pictures Below 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 www.hfordpierson.com. 
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