The ALS Association Western PA Chapter gathered this weekend at the Sheraton Station Square Hotel and it was evident – all they want for Christmas is a cure.  The venue provided a festive backdrop for ALS supporters to reflect on the milestones achieved this past year in their fight to advance global research for ALS and help families affected by the disease live fuller lives with compassionate care and support.  The annual holiday celebration, hosted by the Chapter, is an opportunity for staff to “deck the halls” on behalf of all the ALSA donors, friends and family who embraced the season of giving and the mission all year long.

“We host this event, not just to hand out awards to individuals who have gone above and beyond to help all those living with ALS, but to let our ALS community know where their generous donations are going, what their fundraising has done for others and especially to show our appreciation and ensure that all those living with ALS understand that they are part of a greater community, a large ALS family,” said Merritt Holland Spier, Executive Director for the ALS Western PA. Chapter.   “In 2016 every run, every step, every stride, every penny, every dollar, every voice added up and made a positive change in research, advocacy and patient care for ALS.”

Nationally, through money raised by the Ice Bucket Challenge, The Association funded 150 active research projects and in July 2016 researchers announced NEK1 – a gene found to be among the most common ALS genes and an exciting new target for drug development.  Advocacy efforts in Harrisburg last May also resulted in an increase in PA State funding for patient care from $350,000 per year to $500,000 per year.

“The ALS Association Western PA Chapter donors, advocates, friends, patients, and families helped change the lives of over 325 people living with ALS in the Western PA region,” said Merritt.  The Chapter was able to provide over 5,000 hours of respite care, 40 home modifications to make homes wheelchair accessible, loan or provide over 211 speech generating devices and provide social workers, speech therapists and healthcare professionals to meet with patients and their families over 305 times.

The Western PA Chapter major events included: The Ski to Defeat ALS, participation in The Pittsburgh Marathon and the Erie Highmark Walk for A Healthy Community, the 2016 Johnstown Walk to Defeat ALS and the 2016 Pittsburgh Walk to Defeat ALS – all meeting or exceeding their fundraising goals and funding 58% of the Chapters operating budget.

Merritt was also quick to site their support for caregivers, “which is second to none.”  The Chapter has won several ALS Innovation Awards for their programs designed specifically in support of them.  “We know just how important it is to take care of one’s self when taking care of other,” she emphasized.  The Chapter’s “Powerful Tools for Caregivers” classes are booked solid, their Caregiver Appreciation Weekend at Seven Springs remains one of their favorite programs designed to provide relaxation and a break for the busy life of a full-time caregiver and Chapter support groups, including grief counseling, have the highest attendance ever reported.

The Chapter also held the Anne Lewis Advocate & Humanitarian Award this past May, recognizing the Live Like Lou Center for ALS Research at the University of Pittsburgh and supported their efforts with a $35,500 gift.

“The annual holiday party is one of my favorite events of the year,” said Merritt. “It’s a chance for those living with ALS to come together with their families and with our Chapter staff and Board to socialize.  Our office staff and Board of Directors are committed and dedicated to the cause and are as passionate about finding a treatment and a cure as much as our beloved patients and families are.  This event makes us all feel part of large family, bonded by a horrible disease, but bonded in a fight to cure and treat it.”

The holiday celebration included Annual Chapter Awards.  “Each one is named after someone who had a significant impact on the growth and success of our Chapter and the recipient is chosen by the staff and Board each year,” Merritt explained.  “These are special to us and very special to the awardees.  Please join us in recognizing this year’s winners and thanking each and every person who supported ALS either with time, talent or treasury – or all three.  We feel blessed to know and work with so many generous groups and incredible individuals.”

2016 Honorees:

  • The Monessa Tinsley-Crabb Voice of Courage Award: Mara uses only a speech generating device to help increase ALS awareness to the public and to other healthcare professionals.  Mara has led several educational classes at healthcare facilities and has given multiple presentations at our ALS symposiums.
  • The Rite G. Patchan Volunteer of the Year Award:  ALS Kids – Founders Maeve Shaughnessy, age 11 and Sydney Birchard, age 11.
  • The Sarah W. Wood Advocate of the Year Award:  Mary Johnson, who has lost 12 family members to ALS, has shared her moving story to our legislators in Washington, D.C. to help reform and change healthcare and improve drug development.
  • The Robert F. Balint Above and Beyond Award: Kim Fleming, CEO of Hefren-Tillotson which has been the presenting sponsor of the Pittsburgh Walk to Defeat ALS for the last 5 years.
  •  Johnstown Walk: Top Team: Pap’s Pals, Top Fundraiser: Frannie “Who” Findley, Top Corporate Team: Stoystown Autowreckers & Rookie of the Year: Steve Lowmaster.
  •  Pittsburgh Walk: Top Team: Carol’s Crew, Top Fundraiser: Carol Shaughnessy, Top Corporate Team: Knopp Biosciences & Rookie of the Year: Jerry Rogers
  • Marathon Top 5 Fundraisers: Jody Goldie, Courtney Yacobucci, Curtis Wargo, John Roth & Jason Cooper