BENEFITING: JOHN RITTER FOUNDATION FOR AORTIC HEALTH
ORGANIZER: JOHN RITTER FOUNDATION FOR AORTIC HEALTH
EVENT DATE: Nov 06, 2016
Philip R. DeBiase, Jr - 1941-2015
It is my honor to run the 2016 NYC Marathon in memory of my dear friend Phil DeBiase. Phil died April 17, 2015 due to an abdominal aortic aneurysm.
Phil was tireless in his ability to make everyone he met feel special. He lived his life to the fullest everyday, making the world a better place with him in it. He was so much to so many people, it's impossible to capture his spirit in words.
"There are some who bring a light so great to the world, that even after they have gone, the light remains". This truly sums up my friend. His light will shine upon me forever.
Is is also my honor to run in memory of my dear friend Debbie Janoff's mother
Ilene Roberts - 1941-2008
Ilene Roberts was an amazing, strong and inspiring mother, grandmother, sister, aunt and friend. Ilene passed away on January 23, 2008, at 67 years young, and is still sorely missed by her family and friends.
Ilene was diagnosed with Marfan’s Syndrome in 1995 after being rushed to the hospital because she experienced what turned out to be the first of many life-threatening aorta dissections. Ilene was originally misdiagnosed because there was no known family history of Marfan’s Syndrome. At 5’7” Ilene was tall but not tall enough to raise a red flag, she didn’t outwardly present with distinctive Marfan’s symptoms.
Marfan’s Syndrome is a less common disease which is actually a genetic tissue disorder which affects the skeletal system of the body. Most people with Marfan’s are distinguished by their extreme height and very long fingers and toes. There are some other less noticeable symptoms, the most serious is an enlarged aorta, and also a very pointed palette and possibly myopia of the eyes. Abraham Lincoln is generally the person most people refer to when describing someone with Marfan’s Syndrome. A person who has Marfan’s has a 50/50 chance of giving birth to a child with Marfan’s. Someone who does not have Marfan’s is not at risk of having a child with the Syndrome.
After it was discovered that Ilene did have Marfan’s her children, brother and his children were all tested. It turned out that Ilene’s mother had Marfan’s, and it is likely that her grandmother who passed away when Ilene’s mother was a young girl, probably had it too. Ilene’s only sibling, her brother and his 2 children were found to have the Syndrome as did Ilene’s youngest daughter. They all had classic characteristics of Marfan’s once they became more familiar with the syndrome. In a very short time, this family went from never having heard of Marfan’s Syndrome, to a family where nearly everyone had Marfan’s Syndrome. Only Ilene’s eldest daughter was unaffected, and therefore her children could not have it.
Ilene was a true fighter; she was not ready to give up. Ilene’s outlook and attitude was inspiring. At times her disease left her weakened and she also suffered with a paralyzed vocal cord from having been intubated too long after one of her surgeries. For Ilene the worst part of the disease was knowing that one of her beloved daughters also had Marfan’s. Her family always believed that Ilene actually saved their lives. Had they not known about the Syndrome, when her daughter had a massive cardiac dissection just 12 weeks postpartum, she would have probably died. Similarly, Ilene’s niece suffered a massive aortic dissection as a young attorney in NYC and was able to tell first responders what she suspected was wrong with her on the way to the hospital, that probably saved her life as well. Ilene’s brother and nephew opted for elective aortic valve replacement surgery rather than wait for the potentially disastrous outcome which would likely happen.
Ilene had 4 grandchildren who were her life and her loves. The eldest was just 18 when she passed away and today the youngest is now 18. Ilene was their biggest fan, cheerleader and she told everyone about how wonderful they were. When Ilene’s youngest grandchild was diagnosed (he is the only son of the daughter with Marfan’s), it meant that there were 3 living members of the same bloodline with the same genetic mutation. They became a case study for a team of doctors at Johns Hopkins to hopefully learn more about Marfan’s Syndrome.
There were many times when Ilene could have given up and let the disease win, but she had too much to live for. Ilene loved to travel, play mah jong with her friends, volunteer at the St. Barnabas ACC and give her support to the National Marfan Foundation. Above all else, her most favorite thing was to spend time with her children and grandchildren.
Ilene had problems with her hips most of her life but the last few years she was suffering and wasn’t able to do things she enjoyed without pain. These problems were as a result of her Marfan’s Syndrome so Ilene ultimately decided to have hip replacement surgery in hopes of improving the quality of her life. This was supposed to have been a relatively simple procedure, especially when compared to the much more life threatening operations of the past 11 years. However, on January 23, 2008, Ilene passed away suddenly and without any warning just before that operation, likely from complications related to her Marfan’s Syndrome. Ilene left behind a shocked and devastated family who still miss her every day.
Ilene would be so proud if she knew that we were bringing more attention to Marfan’s Syndrome and Aortic Dissection Diseases through the work of this team. Congratulations to the runners of the NY Marathon on behalf of the family of Ilene Roberts.
JOHN RITTER FOUNDATION FOR AORTIC HEALTH wrote -
The John Ritter Foundation for Aortic Health (JRF) is proud to be an official charity of the TCS NYC Marathon to take place on Sunday, November 6, 2016. This is an amazing opportunity to increase awareness of thoracic aortic disease, as well as raise funds to support education and research. We are so honored to have been chosen.
Funds from the marathon will benefit the John Ritter Research Program in Aortic and Vascular Diseases (JRRP) at The University of Texas Health Science Center at Houston (UTHealth) to support research to identify genetic risks for aortic dissections.
“The funds raised by Team Ritter will allow us to continue our genetic research to identify genes or altered DNA that increases an individual’s risk for an acute aortic dissection. By identifying who is at risk, we can prevent the premature deaths due to aortic dissections,” said Dianna Milewicz, M.D., Ph.D., director of UTHealth’s John Ritter Research Program. “It will also help us spread information to both physicians and the public about symptoms and genetic risk factors for aortic dissections, including the fact that this condition can run in families.” Milewicz is also professor and George H. W. Bush Chair in Cardiovascular Research in the Division of Medical Genetics at the UTHealth Medical School.
Questions? Please send an email to info@JohnRitterFoundation.org.