Special Events Stories & Photos

Celebrating the New York Fun Walk: A Day of Awareness, Fundraising, Community and Remembrance
Uniondale, N.Y., December 2011

The Lugo Team walks arm in arm at the New York Fun WalkThe Lugo Team walks arm in arm

On Saturday, Dec. 10, 2011, a crowd of more than 350 people gathered at Nassau Coliseum in Uniondale, N.Y., for the 7th Annual New York Fun Walk. This year’s event, held indoors for the first time, allowed attendees the opportunity to attend the New York Islanders hockey game following the walk, at which PHA was the “Charity of the Game.” Spearheaded by Long Island PH Support Group co-leaders, Joanne Sperando-Schmidt and Mary Bartlett, the annual New York Fun Walk has become a staple event in the lives of PH patients, families and friends in the New York metro area.

While the New York Fun Walk celebrated its seventh anniversary this year, Joanne, Mary and members of the Long Island Support Group have been coming together to raise PH awareness and funds for research for more than 10 years, starting with garage sales and luncheons. Then in 2004, after hearing Jack Stibbs talk about his fundraising efforts at PHA’s International PH Conference, Joanne knew her group could do more.

In November 2005, to correspond with PH Awareness Month, the group used their talents and ideas to host the first New York Fun Walk. The Fun Walk drew a crowd of about 100 people and raised $18,670. Since then, the walk has grown significantly, drawing a yearly crowd of 300-400 people and raising more than $340,000 since its inception. Joanne attributes this success to various factors. The first is getting everyone involved. Joanne encourages all members of her support group to reach out to their networks to spread the word about PH, encourage event attendance and/or raffle donations. As a result, each year attendance, the number of patient and family teams, and the number of raffle prizes has increased. Support group member Linda Sullivan and her family managed this year’s raffle of more than 70 items and raised more than $4,000.

Raising PH awareness is also an important element of event success as it connects the crowd to the cause. Guest speakers — including this year’s honored guest, PHA President and CEO Rino Aldrighetti — educate the crowd about PH and share their stories and current advances in the field. This year the New York Fun Walk also paid tribute to PH doctors. All PH treating physicians in the New York metro area were invited and honored and acknowledged with a plaque during the ceremony.

Framed photos at the candle lighting memorialFramed photos at the candle lighting memorial

Aside from raising PH awareness and funds for research, the New York Fun Walk has allowed patients, those who have lost a loved one to PH, medical professionals, friends and families to “stand together.” In 2007, Joanne went one step further in strengthening this community of support by incorporating an “Angel Board” and Memorial Balloon Release into the walk as a way to honor the lives of those lost and to remind everyone that these patients and their families will always remain a part of our community. The “Angel Board” hosts photos and messages, and prior to the walk start, Joanne reads each name, followed by “We remember you.” Family members and the community would stand together and release the balloons simultaneously in remembrance.

This year, in lieu of a balloon release, a candle lighting ceremony was held. Framed photos of loved ones and candles adorned a table by the stage. As Joanne read the names, families came forward and lit the candle in front of their loved one. The candles remained lit throughout the event, symbolizing the ongoing presence of these angels and a reminder to keep striving for a cure.

Although they are very tired at the end of each walk, Joanne and all members of the planning committee remain committed to creating an event that truly captures the essence of a PHA special event — raising PH awareness and funds for continued research in the field, while nurturing a sense of community and remembrance among PH patients, families and friends. The New York Fun Walk is truly an event created by the community for the community.

By Leslie Mahaney, PHA Special Events Associate


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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.