Our work
Here are some of the ways we’ve pursued our mission.
Supporting Families
Sophie Anne's Fund, at the UPMC Children’s Hospital, provides vital and flexible resources to families with children in need of medical treatment for scleroderma. The purpose of the fund is to alleviate the financial stress that often accompanies treatment for this chronic condition. The ability to focus solely on a child's treatment, without the added burden of financial concerns, is crucial for families navigating the challenges of pediatric scleroderma treatment. A Lasting Mark Foundation was able to make a donation to this fund in 2023. Read more about Sophie Anne’s Fund.
Research Efforts
Dr. Sarah Taber, Marybeth Medolla, Luke Medolla and Dr. Thomas Lehman standing in front of the Luke Medolla plaque at the Pediatric Rheumatology Department in the Hospital for Special Surgery.
“A Lasting Mark Foundation funded my research into the genetic causes of localized scleroderma, which examined why the disease occurs in specific patterns. This research, which utilized genetic sequencing, would not have been possible without a generous grant from A Lasting Mark.”
On a personal level, support from A Lasting Mark helped crystallize my interest in and understanding of localized scleroderma; I now treat many children with LS throughout the tristate area, as well as patients from the rest of the US and beyond. With help from A Lasting Mark, I look forward to continuing to improve outcomes for patients with localized scleroderma.
– Dr. Sarah Taber
Hospital for Special Surgery Pediatric Rheumatology
“A Lasting Mark funded my research on how certain immune cells can protect skin in health but become dysfunctional in disease. This support allowed us to jump start a project that has now blossomed into a bigger project where we are looking at ways to “normalize” protective immune cell function to limit tissue damage in disease. A Lasting Mark is making a difference in our quest to find better treatments for scleroderma.”
– Theresa T. Lu MD, PhD
St.Giles Chair for Pediatric Research
Autoimmunity and Inflammation Program and Pediatric Rheumatology
Hospital for Special Surgery Research Institute
Caring for the Community
“Kiah and I would like to thank A Lasting Mark for their incredible generosity. Your ability and willingness to help us has been life changing and will never be forgotten!! Your foundation’s name is ever so appropriate! A Lasting Mark indeed!”
We applied and were granted a scholarship to attend the Kids get Scleroderma too Convention in Denver, Colorado. We wanted to go to this convention more than anything. Being diagnosed just shy one year from date of the convention we felt so incredibly lost and alone, in a financial hardship and our entire family an emotional mess.
It wasn’t until we got to the KGS2 convention that I even understood the severity this diagnosis had affected our beautiful daughter, Kiah. There is this quote I love. “Life is too ironic to fully understand. It takes sadness to know what happiness is. Noise to appreciate silence, and absence to value presence.” This quote rang so true. I didn’t fully see how this disease stole my daughter’s spirit! Her true happiness, until I saw her at KGS2. There was a genuine laugh I hadn’t heard in almost a year! There was life back in her eyes! Kiah walked away with lifelong friendships! In fact, Kiah didn’t even sleep with me. She slept with one of her new best friends in their room! The pictures taken say it ALL.
Kiah walked away feeling empowered! It’s safe to say I watched Kiah walk into KGS2 as a victim and walked out a VICTOR! Luke’s story we will NEVER, EVER forget. He made us laugh, and cry! He gave us hope! Thank you Luke for being you! Thank you A Lasting Mark for funding our flights, fees, transportation, and lodging we will forever be grateful!
— Trina Florence & Kiah The Warrior
“I cannot thank A Lasting Mark enough for all they have done and are continuing to do. Because of the foundation we were able to attend the convention in Colorado. We not only received information we also received hope, love and acceptance and Jessie gained a mentor in Luke and life long friends.”
Jessie has hung on to the words he spoke at the convention and they have helped her to get through some very difficult situations. When Jessie left school at the end of May she appeared to be fine but when she returned the end of August things were different. Many of the students had questions. One of the things Luke encouraged Jessie to do was raise awareness. Because of Luke she was able to do just that. Jessie was also able to make friends with two girls at the convention. The girls stay in touch and speak weekly. Those friendships are priceless and would not have been possible without the help of A Lasting Mark. Jessie now wants to use her voice to raise awareness and support for Juvenille Scleroderma so that a cure can be found.
— The Clark Family
