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Research At this present time there are organizations that are researching this terrible disease in hopes of finding a good treatment of a cure. The following are among these research groups and organizations that are concerned with progeria.
International Progeria Registry
NY State Institute for Basic Research
Staten Island, NY 10314
Phone: 718-494-5333
Progeria Research Foundation, Inc.
PO Box 3453
Peabody, MA 01961-3453
Phone: 978-535-2594
Website: http://www.progeriaresearch.org; E-mail : progeria@netzero.net
Progeria Research Foundation
P.O. Box 3453
Peabody, MA 01961-3453
Phone: 978.535.2594
Fax: 978.535.5849
E-mail: progeria@netzero.net
Web site: www.progeriaresearch.org/
Friends of Progeria Foundation, Huron, SD
The Sunshine Foundation® (for children with terminal, chronic illnesses such as progeria, dedicated to making the dreams of these children possible)
1041 Mill Creek Drive
Feasterville, PA 19053
Phone: 1.800.767.1976 or 215.396.4770
Fax: 215.396.4774
E-mail: philly@sunshinefoundation.org
Web site: www.sunshinefoundation.org/
Sunshine Foundation, Dream Village
PO Box 255, 5400 C.R. 547 North
Loughman, FL 33858
Phone: 800.457.1976 or 863.424.4188
Fax: 863.424.4360
E-mail: florida@sunshinefoundation.org
Web site: www.sunshinefoundation.org/dream_village.htm
Sunshine Foundation, Volunteer Chapters California, Colorado, Delaware, District of Columbia, Georgia, New Jersey, Pennsylvania, West Virginia
Black Hills (PO Box 5009, Rapid City, SD 57709-5009, Phone: 605.393.0426, Fax: 605.393.1369, Fax On Demand: 605.393.0426, option 10)
International Progeria Registry
c/o W.Ted Brown, M.D., Ph.D.
NY State Institute for Basic Research in Developmental Disabilities
1050 Forest Hill Road
Staten Island, NY 10314
Phone: 718.494.5363
Fax: 718.494.1026
The following is a statement from the Sunshine Foundation and its mission.
In 1981, the Sunshine Foundation had been in existence for six years and had handled approximately 500 special dreams of seriously ill, chronically ill, and physically challenged children. It was brought to Sunshine's attention via a newspaper article that a young boy in South Africa, named Fransie, had a dream to visit Pinocchio. The inspiration for this dream came from this boy seeing himself in a mirror. Because of his wooden appearance, he felt in some way related to Pinocchio. Having read the article, Sunshine embarked on making yet another dream come true, unaware that this particular endeavor would bring about the knowledge of a very rare illness to the world. Fransie had his dream come true in December 1981. The Sunshine Foundation flew Fransie and his family to Disneyland where he saw Pinocchio. During his visit to the United States, three other children, also suffering from Progeria, met with him. Sunshine began receiving correspondence from other families whose children had similar characteristics. That following June, 1982, Sunshine sponsored the first gathering of all known children suffering from Hutchinson-Gilford Progeria, a rare aging disease. At that first reunion, eight Progeria children and their families gathered at Greenway Lodge in the Pocono Mountains of PA. Since that time, Sunshine has sponsored 20 Annual Progeria Reunions, touching the lives of these special children forever. The reunions give these children a week to enjoy with other children like themselves. The time they spend together is not only fun, but it is something that gives them strength and a sense of anticipation in looking forward to the next year.
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