Annual ‘Funtasia’ fundraiser offers hope for rare bone disease

Event raises money for Craig and Susan Eaton’s MHE Research Foundation

September 20, 2017 By John Alexander Brooklyn Daily Eagle

From left: City Councilmember Vincent Gentile, Brooklyn borough president candidate Vito Bruno, Vincent Eaton, Susan Eaton, Craig Eaton and Bob Howe. Eagle photos by John Alexander

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On Sunday, Sept. 17, attorney and former Brooklyn Republican Party Chairman Craig Eaton and his wife Susan hosted “Funtasia,” an annual event geared to raise money for their Multiple Hereditary Exostoses Syndrome (MHE) Research Foundation. MHE is a rare genetic bone disease in which bone tumors cause pain, limited joint movement and other serious complications.

The well-attended event held at the El Caribe Country Club in Mill Basin featured music, dancing, food and prizes. All of the proceeds from the banquet are donated to the MHE Research Foundation, a nonprofit organization that advocates for treatment options for those with the disease.

The Eatons have experienced the ramifications of the disease firsthand. Their youngest son Vincent, 22, a graduate of Villanova University, was diagnosed with MHE at 7 months old. At 15, he developed a form of bone cancer. He has since undergone 35 operations throughout his life to correct abnormalities precipitated by the illness. The Eatons also have an older son, Chris and daughter Danielle, who are both involved in the MHE Research Foundation.

The event brought out elected officials and civic leaders from across both sides of the political aisle. U.S. Rep. Dan Donovan was there to offer his support, as were City Councilmember Vincent Gentile and radio host and Red Apple Group CEO John Catsimatidis.

The first Funtasia was held in 2005. In 1994, Vincent was diagnosed with MHE after a routine checkup, when the pediatrician thought that he had a cracked rib and sent him to an orthopedist, where Susan received the news that her son had MHE.

“Back in 1994 there wasn’t Facebook, there was nothing on the internet. I didn’t know anyone who had MHE. We were thinking we were alone and that Vincent was the only one who had this disease. It wasn’t until social media and the internet that people were able to actually connect with other people suffering from the same disease.”

She said that the MHE Research Foundation was all about raising awareness and raising funds for the medical research that needs to happen in order to get to the next level.

“We are blessed to have the best people in our lives,” said Susan. “And I look forward to the day that we can all stand up together and say MHE is a thing of the past,” said Susan.

Craig thanked Susan for singlehandedly putting the event together. “Since establishing the MHE Research Foundation almost 11 years ago, my wife Susan, [MHE Vice President] Sarah Ziegler and I, together with our families, have worked tirelessly to raise awareness of MHE,” said Craig.

“Our goal is to advance medical research, to expand our database of clinicians around the world, and to aid the parents and families of MHE children —providing direction, compassion, a shoulder to cry on, a calming and friendly voice to answer all of their questions and most of all, hope: Hope that their child will be OK, hope that the pain and surgeries will one day end and true and desperate hope that someday a cure will be found. With clinical trials to be held over the next year, we have achieved the hope that we have been seeking for many years.”

He called the foundation a grassroots organization and MHE an “orphan disease” due to the lack of knowledge of it among the general public. “There are no national spokespeople for MHE,” said Craig. “There are no actors or actresses or sports celebrities spending millions of dollars of their own personal resources and fortunes to find a cure, and there are no parties in Hollywood or Beverly Hills.”

The honoree for the evening was Dr. Kevin B. Jones, a physician scientist who provides diagnostic and surgical management of bone and soft-tissue tumors in children and adults. Jones has been working diligently on to find a cure for MHE.

Gentile thanked everyone for supporting the MHE foundation. “Groups that do research look to organizations like MHE to help them continue to do research into this rare bone disorder,” said Gentile.

“This kind of bone disorder can have a debilitating effect on movement, but we do have hope and Vincent is the epitome of hope in this regard because his movement is so great that his dad told me that yesterday he was out playing lacrosse, so that’s good news. Vincent, congratulations.”

Maurizio Pacifici, director of orthopedic research at The Children’s Hospital of Philadelphia, specializes in creating new treatments for rare diseases such as MHE. Pacifici alluded to a potential breakthrough in treating MHE.

Susan presented Pacifici with a check from the MHE Research Foundation for 15 thousand dollars to help continue his research.

Vincent Eaton described growing up with MHE as a very unique experience. He referred to all the doctor appointments, the x-rays and the surgeries as having become very routine.

“Now that I am older I am fully aware of the serious complications this disease can have and it’s taken its toll,” said Vincent. “As a child I was always told that by the time I was 18, 19 or 20 years old all the complications and surgeries would end. But as we all know, that has not been the case, and it’s not the case for most MHE patients. Just this past summer I had two major surgeries that were very long to say the least. The truth is I’ll never likely stop facing the complications of this disease.”

He ended on a positive note saying that thanks to the MHE Foundation and the clinical research being conducted, it has been “a dream come true” for himself and other patients who have MHE.

For more information about MHE, got to MHERF.org.