Voices from Our Community: Joyce Schwartz Spreads Her Message about Normal Pressure Hydrocephalus

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Four years ago, Mia Padron of Long Island, New York, was on a mission to make a difference for the life of her son and all other individuals living with hydrocephalus. Her son, Tyler, who is now 10, was born with hydrocephalus but not diagnosed until he was 23 months old. Those 23 months were emotionally taxing as Mia instinctively knew something was not right, despite Tyler’s pediatrician advising her otherwise. Once Mia and her family learned about and accepted the diagnosis and Tyler received his first shunt, her true “New Yorker” came out. She decided there needed to be more attention on the condition affecting her son and 1 million other people in the U.S. She decided there needed to be funding to find a cure. She decided she needed to make her voice heard.

Mia contacted her state senator, Senator John Flanagan. She made an appointment to meet with his staff. She educated them on hydrocephalus, she brought hydrocephalus pins for the staff to wear, and she made the condition real by sharing Tyler’s story. When the staff briefed the Senator, he took the information and turned it onto a state resolution declaring September Hydrocephalus Awareness Month for the State of New York. This resolution needs to be passed annually and every year Mia and Senator Flanagan unite again to submit the resolution. This year, Senator Flanagan invited Mia and her WALK Co-chair and close friend, Jackie Davidson, to accept the resolution in person and be part of the official press release from his office. Unfortunately, Jackie was unable to attend. You can read the press release here.

Action inspires, and both Mia and Jackie have been enormously inspirational for the HA community. Seven years ago, Mia attended her first WALK on Long Island. She met Jackie Davidson, also a mother of a son with hydrocephalus. Jackie’s son Jordan is now 12 years old. The following year, the two of them volunteered to work on the WALK. They became fast friends. They volunteered one more year together and then in 2009 the two of them stepped up to lead the Long Island WALK. That year Senator Flanagan joined them, serving as the honorary WALK chair. Mia and Jackie have been leading the WALK ever since. They do it for their boys. They do it for their families. They do it for everyone affected by hydrocephalus. Together, they know they are making a difference for tomorrow, raising awareness and funds to help advance research for a cure. It is one of the most successful events for HA, last year raising over $71,000.

Mia reflects on the WALK and why she continues to chair the event. “The day is an amazing feeling – all the people coming together for one cause for the same reason. Everyone becomes one. It’s a feeling you can’t describe.”

This year’s Long Island WALK is this Saturday at Belmont Lake State Park on Long Island, New York. Dawn Mancuso, the CEO of HA and a native of Long Island, will be joining Mia and Jackie and all of the Walkers at this year’s event.

 

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