There are very few areas of The ALS Association Greater New York Chapter’s mission and fundraising efforts that the Young Professional Group (YPG) hasn’t contributed to. Members have pledged to be present at every Walk to Defeat ALS in the region, created a grant program to help more patients and they have organized new fundraising events around New York City to spread the word about ALS and The ALS Association.
YPG Treasurer Annie Cullen, said that she has seen the group develop from the time she joined three years ago. “Since I started I’ve seen a huge transition in what we’ve been able to accomplish and the group has grown tremendously.” Annie joined the YPG when she met them at the Long Island Walk to Defeat ALS in 2012, less than a year after her father was first diagnosed.
Annie started going to the ALSA Support Group in Stony Brook with her father and says the people there were instrumental in helping her family. She joined the YPG and about six months later in May 2013 her father succumbed to the disease. “I went right back that next month to the YPG meeting,” she said. “It was really special that all of a sudden I had a group of peers that had parents, grandparents, other relatives and friends who had ALS. To me that was my connection to my dad.”
At the time, the group was hosting a fall fundraiser and quarterly Happy Hours. Members decided they wanted to do much more. They thought about their mission as a group and how they could make the greatest impact on the most people in addition to the donations they were making to ALS research.
In December 2014 the group’s Fire & Ice Gala at the Waldorf Astoria raised over $20,000, a substantial increase over the previous year’s fundraiser. That money was put to good use providing grants to the Chapter’s Advocacy and Patient Services departments.
The YPG also has a strong presence in Washington DC for the annual ALS Advocacy Day and have been able to see firsthand how much of an impact ALS patients have on the lawmakers they meet with. This year the YPG created an advocacy grant of $1,500 for a patient to attend Advocacy Day. A patient might need to bring a caregiver and/or medical equipment to make the trip possible, but the cost can be prohibitive for those who really want to attend. PALS Sonal Shah, a tremendous ALS advocate, was the beneficiary of the first grant this spring.
In addition, the YPG created a Patient Service grant of $1,000, donating a head mouse to the Chapter’s equipment loan closet. A head mouse allows a patient who still has movement in their neck, but has lost movement in their hands, to be able to control a Speech Generating Device. According to Assistive Technologist Ben Lieman, there was someone on a waiting list for that very piece of equipment, immediately making the life of a PALS a little bit easier.
The group plans to continue the tradition of donating funds to ALS research at this year’s Lou Gehrig Sports Awards Benefit, covering all three of The ALS Association’s mission priorities: Research, Patient Services and Advocacy.
The YPG still hosts Happy Hours around Manhattan and has recently introduced fitness events into their fundraising efforts. In July, their exercise fundraiser at Mile High Running Club attracted over 20 runners and raised $795. The YPG team also raised a total of $22,644 this year at the New York City Walk to Defeat ALS, all while garnering the prize for best t-shirt. Since its inception, the YPG has raised almost $130,000.
Volunteerism is also an important part of the YPG mission. Last year, members of the YPG delivered baskets filled with food and other items to families in the area as part of the Chapter’s Thanksgiving Day Meal Program. “To be able to experience the appreciation of the families, and spend time with them, is really rewarding for us,” said YPG President Amanda Levine. “If we can make one day easier for PALS and their families, we have done our job.”
Annie says that the work that the YPG does is vital but it also gives her personal satisfaction and the support she needs. “Living through my dad’s illness and being a YPG member while that occurred was special to me,” she said. “You just connect. They’re all my friends now.” She also says the YPG is looking to continue the momentum it’s gained this year. “We really want to have the most significant impact we can in every area of ALS.”
For information about joining the ALS Association’s Young Professionals Group, contact Sarah Pattison at (212) 720-3042 or email@example.com. For information about the next general meeting of the Young Professionals Group please email firstname.lastname@example.org.