A Special Thank You…
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.
- Number of Children Identified Continues to Soar
- PRF’s Annual Report for 2011 is here!
- Special Edition Newsletter!
- Progeria Takes Center Stage at Prestigious TEDMED Meeting
- A Special Thank You…
- ONEpossible ™ Campaign Reaches its Goal!
- HBO Documentary Premiering at Film Festivals, Fall Broadcast Planned
- The World Learns of Progeria Treatment
- WE DID IT! First-ever Treatment for Progeria Discovered!!
- PRF’s 2013 Scientific Workshop
WE COULDN’T HAVE DONE IT WITHOUT YOU…
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.
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 The Family Inn/ Yawkey Foundations |
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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!