Cupcakes for a cure: 10-year-old raises funds for ALS

The bake sale recently held outside of Vineyard Vines is just one way that Sydney Petrone, second from right, is helping raise money to fight ALS, which her father suffers from. She was joined at the bake sale by, from left, her mother Denise Petrone and friends Olivia and Laila Graham. — John Ferris Robben photo

The bake sale recently held outside of Vineyard Vines is just one way that Sydney Petrone, second from right, is helping raise money to fight ALS, which her father suffers from. She was joined at the bake sale by, from left, her mother Denise Petrone and friends Olivia and Laila Graham.
— John Ferris Robben photo

Fathers and daughters often share a special bond but 10-year-old Sydney Petrone has gone above and beyond for her father, former Greenwich Police Sgt. Roger Petrone, raising hundreds of dollars over the last year for amyotrophic lateral sclerosis (ALS) research.

ALS, more commonly known as Lou Gehrig’s disease, is a rare and fatal disease of the nerve cells in the brain and spinal cord. But Sydney’s efforts to fight this disease are not just her doing a good thing. This is a very personal fight for her.

Sgt. Petrone, a decorated Greenwich police officer and a former member of the department’s SWAT team, has suffered from ALS since 2007. He is now confined to a wheelchair and is no longer able to speak or even raise his arms above his waist. Most individuals coping with ALS live an average of just three to five years, but Sgt. Petrone, who was diagnosed at age 36, has beaten the odds after six years of battling the disease.

In hopes of helping her father, and others who suffer from ALS, Sydney began conducting fund-raisers for the disease at age eight. In 2011, the youngster, with the help of town organizations and community sponsors, organized a fund-raiser at the Boys & Girls Club of Greenwich. Residents were invited to read books and play games in exchange for a $1 donation, ultimately raising more than $7,000 for the ALS Therapy Development Institute in Cambridge, Mass.

Sydney’s success was repeated last year with a fund-raiser at the Boys & Girls Club’s Camp Simmons. The 2012 benefit provided activities of all kinds for participants including arts and crafts, a two-mile walk, soccer, basketball, softball and face painting and yielded more than $3,000 for the MAC Angels Foundation, a nonprofit organization whose mission is to enhance the quality of life for patients, family members and caregivers affected by ALS.

Now a rising sixth grader in Greenwich, Sydney has continued her successful efforts in 2013 with a number of fund-raisers around town. In an interview with the Post, Sydney said the concepts behind the fund-raisers she creates are always her own. This year, she thought it would be a “fun and cool” way to raise money by holding a number of bake sales, which have been conducted at Soul Cycle of Greenwich, Vineyard Vines and Equinox of Greenwich, she said.

Fortunately, Sydney said, the community is always generous, donating plenty more than the $1 asking price at the fund-raisers. Accordingly, a spin class and bake sale held at Soul Cycle in February raised $200, while two Equinox bake sale events featuring two cardio classes each yielded $705 and $350, and a recent Vineyard Vines “Shop for A Cure” event, co-hosted by Chief of Police James Heavey and Lt. Richard Cochran, raised $420.

The funds raised are donated, in part, to Sgt. Petrone to help pay for his medical aides, while the rest are donated to the ALS Foundation and the ALS Therapy Development Institute’s (ALS TDI) Tri-State Trek, Sydney said. The trek, which Sydney and her father have attended for a number of years since his diagnosis, has become something of a tradition for Greenwich police officers who have participated in the event. Under the leadership of Lt. Cochran, officers have ridden in this for the last six years in honor of Sgt. Petrone and did it again this year.

This year’s Tri-State Trek was July 19-21 and several GPD members participated in the 270-mile bike ride from Newton, Mass., to Greenwich, benefiting the ALS TDI. In a June interview with the Post, Lt. Cochran said he had recruited 11 people to make the three-day journey for his Tri-State Trek team, which was comprised of GPD members and even some local teachers.

Whether residents are participating in the trek or joining Sgt. Petrone in cheering on the cyclists, the town has always been highly supportive of the event, its cause and Sgt. Petrone, Lt. Cochran said.

Friends and family have also been critical in supporting the trek, as well as Sydney’s fund-raisers over the years, Sydney said. In fact, she added, many of her own school friends often participate in the benefits, and have expressed their pride in her efforts.

There is perhaps no one, however, who takes pride in Sydney’s accomplishments more than her father, Sydney said. Since his daughter began holding ALS fund-raisers, Sgt. Petrone has been “really proud and encouraging” of her efforts, she added.

Sydney’s mother, Denise Petrone, is also in awe of her daughter’s achievements. In an interview with the Post, Ms. Petrone said Sydney is an inspiration to much of the community, especially her peers.

“Sydney’s experiencing what’s happening with her dad every day and rather than worry and be sad she’s proactive,” her mother said. “She’s doing something about it and using that energy for good.”

Both parents agree that Sydney’s undertakings are not only a benefit to Sgt. Petrone and the ALS community, but also to Sydney herself, Ms. Petrone said. At each benefit, “everyone always gives above and beyond” what is being asked of them, she said. The community, even complete strangers, are always interested in helping out and continue to show a tremendous “outpouring of support.” Their kindness, she added, is teaching Sydney “an invaluable lesson.”

Sydney’s efforts have not gone unnoticed by the more prominent figures in town either, her mother reported. Sydney received a letter of congratulations from U.S. Rep. Jim Himes (D-4th) in June 2012. In the letter, Mr. Himes, a Cos Cob resident, praised Sydney for her leadership.

“Your work organizing events, raising funds, and generating awareness for ALS at age nine is commendable,” Mr. Himes wrote. “You’ve served your community and your family well.”

 

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