Join the FD/MAS 2022 Awareness Celebration

The International Consortium of FD/MAS invites you to its Film Screening and Community Discussion on the 24th of February at 7:30 pm EST. The event is free and is in celebration of  FD/MAS Awareness Week.

The film is award-winning Pacing the Pool. It is a short documentary based on the remarkable life of Richard Pace, who was diagnosed with fibrous dysplasia early in life.

After the screening, Richard will appear as a special guest and join the meet and greet and discussion. You are encouraged to share your FD/MAS story and submit questions about advancing fibrous dysplasia and McCune-Albright syndrome (FD/MAS) research.

The documentary has won worldwide recognition and awards including the Best Short Documentary award at the globally-recognized LAMPA film festival. LAMPA promotes charity and volunteering through cinema.

The week’s events will be launched on February 20th at 11 am EST with a presentation on Facebook by several international FD/MAS experts. You need not be a Facebook member. Your questions and donations advancing the work in progress for FD/MAS research are encouraged.

FD/MAS is a rare genetic disease. It is not inherited. The disease can be traced to a single mutation occurring in the womb during fetus development. There is no cure or treatment to slow symptoms, including a major symptom which is the pain caused by malformed bones. The mission of the International Consortium is to find solutions and improve care.

Registration for the film is free and required for viewing (here).

Note that any demographic information submitted such as age, ethnicity, or gender will not be shared publicly.

In addition: If you wish to join the FD/MAS study or receive its newsletter you may register here.

Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia (AML) six years ago. During this period of partial remission, Rose researched investigational drugs to be prepared in the event of a relapse. Her husband died February 12, 2021 with a rare and unexplained occurrence of liver cancer possibly unrelated to AML.

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