Gratitude

Updated: August 27, 2025

SMA-PME Research thanks friend and consultant Ms. Lisa Eliot with Pampered Chef, LLC. Lisa donated valuable time, energy, and funds to support our charity during an August 2025 FUNdraiser that she initiated for us.

SMA-PME Research thanks Dr. Jeffrey Medin of the Medical College of Wisconsin for his quality review and insightful recommendations which helped our charity update our website.

SMA-PME Research thanks the parents of children diagnosed with SMA-PME and/or Farber disease for agreeing to share their child’s story on our website.

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SMA-PME Research would like to express its gratitude to the research scientists of the multiple countries who participated in the first global forum for acid ceramidase deficiency community alignment on June 26, 2023. A special thanks also goes out to the leaders of the French charity, ASAP for Children, who participated in the forum. Finally, our heartfelt thanks to Dr. Nils Confer, consultant to Aceragen Corporation, without whom the forum may never have been kicked off.

SMA-PME Research is grateful to Mark (RK) Schratz of Chandler, Arizona. Mark celebrated his 70th birthday party in January 2023. In lieu of presents, he asked all his guests to donate to SMA-PME Research to give hope to Adeline. Thank you to you, Mark, and all your family. And HAPPY BIRTHDAY!

Happy Birthday, Mark Schratz!

SMA-PME Research is grateful to two anonymous donors who privately helped Adeline’s family purchase a transport chair and soon an electric wheelchair for her use.

SMA-PME Research is grateful to Allspice Studios, Myrtle Beach, SC, for donating graphic artists design services to the charity to publicize our March 27, 2022, Benefit Concert in North Myrtle Beach.

  • SMA-PME Research would like to thank the donors who attended the March 27, 2022, Benefit Concert: Hope for Adeline. Special thanks to the following individuals and organizations, without which the Benefit Concert may have never happened:
    • Trinity United Methodist Church of North Myrtle Beach
      • Musical Directors Melody and Albert Evans
      • Sound Engineer Matthew Daniel
    • Coastal Carolina University Department of Music
      • Dr. Jeffrey Jones, Chair
  • Grand Strand American Guild of Organists
    • Organist Ms. Roberta Rowland-Raybold