Number of Participants: 100
Hours Donated: 2
Value of Time Served: $1,690
Event Amount Raised: $130,000
Event Type: Health & Medicine
Date: January 10, 2024
Kellenberg Memorial High School
Glenn Curtiss Boulevard, Uniondale
Article by Phoenix writer Grace Andino ’25:
Cameras, Computers and Lights. For Mr. Jeff Harris ’03, Director of Photography and Video, these technologies are very familiar to him, aiding his role in the behind-the-scenes element at Kellenberg. It wasn’t until his daughter, Macie Harris, was diagnosed with a rare disease that he and his wife felt drawn to shine a light on her unknown condition.
Pompe disease is a rare genetic condition that is linked to a decline in muscular strength over time. The effects of Pompe disease differ between each person and can be categorized between infantile-onset and late-onset. In Macie’s case, she was diagnosed with late-onset Pompe disease after her newborn screening nine days following her birth.
Unlike infantile-onset, late-onset Pompe’s symptoms are less drastic and side effects can become prevalent later in her life. Based on Macie’s genetic makeup, she may never show any signs or symptoms, but she will be living a life of monitoring. Day to day, Macie lives a perfectly normal life as a typical kid who loves gymnastics and doing arts and crafts. Every six months, she gets blood work done and treatment based on her lab results.
Pompe disease is not a commonly known disease, even for Macie’s mother, Caitlin (Schechter) Harris ‘03, a Nurse Practitioner herself. Mr. and Mrs. Harris’ lack of knowledge of the disease motivated them to share Macie’s story with others, initially inspiring them to start Macie’s Mission. Mr. Harris shares the current progress in Pompe exploration , “There is treatment for the disease, but there is currently no cure. That’s what first inspired me and my wife to start Macies’ Mission. A cure is what we are aiming for.”
Despite not currently having a cure, Macie’s Mission gives back towards Pompe research and proudly supports Dr. Priya Kishnani at Duke Medical Center. She serves as a leader at Duke’s Department of Pediatrics and is making headway in her involvement with the first clinical trial treatment for late onset Pompe disease.
Throughout the past four years, Macie’s Mission has held many events that strive for a ‘stronger tomorrow’ in Pompe’s research. Macie’s Mission’s Rare Disease Day Celebration occurs as close to February 29th, or 28th on non leap years! In conjunction with Rare Disease Month. This year, since February does have 29, Macie’s Mission is looking to raise $29,000 by the 29th, culminating in their Reaching for 29 by 29 Celebration on February 24th. Additionally, Pints for Pompe takes place at Bright Eye Brewery in Long Beach in August to signify the month Macie was first diagnosed.
Surpassing fundraising, Macie’s Mission gives back to those impacted by Pompe at large. Part of the funds raised are sent to patient care, supporting patients who may need a wheelchair, wheelchair ramp, and medical bill aid.
Macie’s Mission has been making progress in the Kellenberg community and inspires many students to support her cause. On September 27th, Mr. Harris spoke to the Health Science club about what Pompe is, current progress in finding a cure, and the general goals of Macie’s Mission. Attendee Mika Accardi ‘25 shares, “Learning about Pompe disease was an amazing opportunity to learn how it affects others. It helped me grow in support of Macie’s Mission.”
More recently, Macie’s Mission held a Basketball Classic that united the Kellenberg community. With over 600 spectators, the event gained tremendous support from all those who attended and included participation by the Boys and Girls Basketball teams, dancers, cheerleaders, and referees. The event had a tremendous turnout and held raffles and donations that will be used towards Pompe funding.
With so much support from the community, Macie’s Mission has surpassed $130,000 donations. From fundraising to community outreaching, Macie’s cause continues to inspire many donors and supporters for her cause.