Select Page

The wonderful news of an effective treatment is being heard around the world, as families, researchers, and PRF supporters celebrate this historic milestone. We pay tribute to the many wonderful people and organizations that helped make this day possible.


To the children with Progeria and their families, thank you for your inspirational spirit and boundless courage.   To our donors and volunteers, thank you for your steadfast commitment, your unwavering generosity, and your endless energy.

The children who participated in the first-ever Progeria clinical drug trial, which proved that the FTI drug lonafarnib is an effective treatment.

We achieved breakthrough results in this first trial because of the tremendous supporters who provided their time, talents and treasure, helping get us one step closer to achieving our ultimate goal of a cure for Progeria. The logos and lists represent the clinical trial team, as well as many who gave money, plane tickets, toys, the drug, housing, rides to and from the airport, travel assistance, and translation, legal and design services.  We also recognize the thousands of people who participated in special fundraising events that helped raise the $2 million needed for PRF to fund the trial.

ALL of this is what got us to a treatment.  And it is what will lead us to the CURE. 

The Clinical Trial Team
Chair: Mark Kieran, MD, PhD
Co-chair: Monica Kleinman, MD
Co-chair: Leslie Gordon, MD, PhD

W. Robert Bishop, PhD – Merck, Pharmacodynamics
Robert Cleveland, MD – Radiology
Annette Correia, OT – Occupational Therapy
Brian Fligor, ScD –  Audiology
Marie Gerhard-Herman, MD – Cardiology
Anita Giobbie-Hurder, MS- Statistics
Catherine Gordon, MD – Endocrinology
Susanna Huh, MD – Nutrition and Gastroenterology
Kelly Littlefield – Trial Coordinator
Marilyn Liang, MD – Dermatology
David Miller, MD, PhD – Genetics
Ara Nazarian, PhD – Orthopedics
Donna Neuberg, ScD – Statistics
Christine Ploski, PT, MS, PCS – Physical Therapy
Nicolle Quinn, MS, RD, LDN – Nutrition
Amy Regen, DMD – Dentistry
Susan Riley, PT, MS, DPT, PCS – Physical Therapy
Armin Schwartzman, PhD – Statistics
Leslie Smoot, MD – Cardiology
Brian Snyder, MD, PhD – Orthopedics
Andrew Sonis, DMD – Dentistry
Paul Statkevich, PhD – Merck, Pharmacokinetics
Nicole Ullrich, MD, PhD – Neurology
Nicole Wake – Cardiology

PRF Ambassadors
Yokasta Abreu
Nadeem Akram
Sandra Batakis
Donna Bertko
Anu Bhimavarapu
Lola Busta
Rich Cummings
Jen Davis
Meg Gannon
Audrey Gordon
Barbara Gordon
Kyra Johnson
Audrey Lampert
Kristin Long
Ali Masood
Jessica Mullen
Kim Paratore
Debbie Ponn
Vickie Robbin
Alicia Sheridan
Susan Sussman
Shyam Tanguturi
Thais VanKirk
Helen Bielawa

Everyone who participated in the following special events that took place from June 2006 – December 2008:

PRF Events
Night of Wonder
International Race for Research
Poker for Progeria

Events led by the CALIFORNIA Chapter
Back to the 50’s Show, St. Paul, MN
BobCo Auto’s F-100 Super Tour, Lake Elisnore, CA
Sioux Falls Ford “Drive the Cure for Progeria” Event, Sioux Falls, SD
UniquePerformance Fest, Farmers Branch, TX
Wheels ‘n Waves car show, Santa Barbara, CA
YearOne Braselton Bash, Braselton, GA

Led by the MICHIGAN Chapter
Lindsay’s Miles for Miracles Fun Run/Walk, Flat Rock, MI

Led by the OHIO Chapter (all events took place in Ohio)
Cub Scout Pack 205 Father/Son Cake Bake, Maumee
Halko Garage & Bake Sale, St. Mary’s

Kaylee’s Course Run/Walk for Progeria, Montclova
Lial Elementary School’s Hats-On Day, Whitehouse
Mercy Hospital and Defiance Clinic Bake Sale/Raffle, Defiance
Park Street Intermediate School events, Grove City
St. Joan of Arc School’s Rock-a-thon, Toledo
Saturn of Toledo/Radio K100 event, Toledo
Whitehouse Christmas Tree Farm tree sales event, Whitehouse

Other Events
Many organized by Italian Association for Progeria – Sammy Basso (A.I.Pro.Sa.B.), Italy
Bud Boys events, Hamilton, Ontario, Canada
CIBC World Markets, Miracle Day USA
IDEAL Day, Evansville, IN
Chris Kempf’s Golf Tournament, Evansville, IN
Aunt Luciana’s many events, Argentina
Annual Megan Nighbor Benefit in Markesan, WI
Ory’s Race for Research, MI
Rock ‘Til You Drop car show, Ft. Meyers, FL
Shop Around 3 Hutchins Drive, Foxboro, MA
Walk in Honor of Kristian McGuiness, Middleboro, MA
Over forty events that took place all over the world, run by our Miracle Maker volunteers!
The Nighbor’s Outback Steakhouse Night, Madison, WI
Parachuting for Progeria!, New York, NY
Meg Gannon’s Boston Marathon Run, Boston, MA

Private Foundations
John W. Alden Trust
Alum-A-Pole Foundation
Amelia Peabody Charitable Fund
Jacob Neil Boger Foundation
Rachel Liba Cardozo Children’s Foundation
Carl C. Anderson & Marie Jo Anderson  Charitable Foundation
Charles Henry Leach, II Foundation
CVS Pharmacy
Joe DiGeronimo Charitable Fund
Jack and Pauline Freeman Foundation
Krauss Charitable Foundation
MCJ Amelior Foundation
Michael Scotto Memorial Foundation
Gordon H. & Karen Millner Family Foundation
Newman’s Own Foundation
Pistons-Palace Foundation
Ritzow Family Foundation
Santa Barbara Foundation
Teammates for Kids Foundation
The Auen Foundation
UPS Foundation,
Henry & Beate Voremberg Donor Advised Fund
Sandra and Tim Wuliger Philanthropic Fund
Yawkey Foundation
Zuckerman Family Foundation

Individual Donors
Nearly 500 of you donated from $5 to $500,000 – THANK YOU ALL FOR YOUR GENEROSITY!