Walk to benefit brothers with progeria

News May 10, 2013 0 Comments

Bennett, 3, and Nathan, 7, both have a very rare form of Progeria. A 3K Walk to benefit the Progeria Research Foundation will be held tomorrow at Penn Charter High School. For more info. go to www.nathanandbennett.org

by Sue Ann Rybak

Julia Fleming, of Wyndmoor, is no ordinary teenager. After interviewing two Erdenheim brothers with progeria, a rare fatal aging disease, for a paper in 10th grade, she decided to make it her personal mission to raise awareness and funds to find a cure for progeria.

On Saturday, May 11, from 9 a.m. o 12:30 p.m., Fleming will hold Walk for a Cure at William Penn Charter School, 3000 W. School House Lane.

Phyllis Falcone, mother of Bennett and Nathan, who have been diagnosed with progeria, said they were excited and grateful to Fleming for organizing the walk to benefit the Progeria Research Foundation (PRF). She said all of the funds raised will help fund ongoing research and clinical trials. Nathan and Bennett are currently participating in one such trial.

“Julia has become one of our biggest advocates for raising awareness about progeria as well as fundraising,” Falcone said. “She has so much energy and has channeled that energy into helping children and families like ours. She is an example of how one person’s efforts can impact the lives of many people.

Falcone said PRF has accomplished amazing things in a short amount of time; from identifying the gene responsible for progeria to possible treatment options and clinical trials.

In September 2012, the Progeria Research Foundation released the results of the first-ever clinical drug trial for children with progeria. The clinical trial, completed at Boston only six years after scientists identified the cause of progeria, showed that a drug, FTI lonafarnib, had a positive effect on weight gain, hearing, bone health and, most importantly, cardiovascular health.

But for children with Progeria, finding a cure is a race against time, and because the disease is so rare the government, pharmaceutical companies and other related businesses do not provide adequate funding for research.

“Money raised at the Walk for a Cure and other fundraisers ensures that researchers can continue at this pace and find a cure for children with progeria and their families,” Falcone said.

Fleming said she wants to raise a total of $30,000 for PRF.

“I know its a big goal but I really think it can be achieved,” Fleming said.

To date she has raised about $8,000.

“These kids are so unbelievably full of life and energy, and knowing that they will only live to 13 just doesn’t work for me,” Fleming said. “I really want to be able to say that I helped these kids live their lives by finding a cure!”

Fleming said she treasures her relationship with the Falcones. She said the first time she walked into the Falcone’s house she fell in love with the boys.

“All the kids said ‘Hi, Miss Julia,’ and Bennett even came up and hugged my knees,” Fleming said. “It was a great moment.”

She said her relationship with the boys and their sister Libby is very special.

“When it comes to the boys, we are all laughs and tickles,” Fleming said. “I really love being with them, and to be honest ,I spend more time at the Falcones than with my own friends. As for Libby, I know she looks up for me, which I like because it’s hard being the sister of two special needs brothers, who are constantly getting attention and events held for them. I like to make her feel special and just as much loved by me!”

“The biggest thing I want to get across in this article is how important it is to find a cure and how little time we have to find it,” Fleming said. “I just want Nathan, Bennett, and all of the other little kids to be able to live a long healthy life!”

Registration for the walk is $20 for adults, $12 for students and $10 for children (under 12). There is no fee for children under 2. Register at: http://secure.e2rm.com/registrant/LoginRegister.aspx?EventID=121671&LangPref=en-CA&Referrer=direct%2fnone For more information go to www.nathanandbennett.org.

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