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Rothmund Thomson Syndrome Foundation 5k, 10k or Half Marathon

Sat September 11 - Mon September 13 Westbrook, ME 04092 US Directions


5 Barker Ln
Westbrook, ME US 04092


Please join us in participating in the Rothmund-Thomson Syndrome Foundation Virtual 5k, 10k or Half Marathon on September 12, 2021 the choice is yours!!  THIS IS A DONATION ONLY EVENT!

Rothmund-Thomson Syndrome (RTS) is a rare genetic disorder that can affect people of all races and nationalities. Symptoms often first appear during infancy, usually between three and six months of age, in the form of a skin rash on the cheeks. Patients can have just a few or several features of the syndrome.

The Mission of the Rothmund-Thomson Syndrome Foundation is to foster worldwide awareness and education about RTS and related disorders and to encourage research through support of scientists and physicians devoted to studying the clinical spectrum, molecular and cellular basis of RECQL4 and related syndromes

The Rothmund-Thomson Syndrome Foundation is a 501(c)(3) nonprofit organization. It was incorporated in November, 2009 by the Kimmel Family after the loss of their daughter Victoria who had RTS. Currently, we operate with six volunteer board members who raise money to support the Foundation's goals.

RTS is characterized by the following clinical features:

  • A unique skin rash, that begins in infancy usually on the cheeks, and spreads to the arms and legs and persists for life. This rash is called poikiloderma, and consists of areas of increased and decreased pigmentation, prominent blood vessels, and thinning of the skin.
  • Sparse/absent scalp hair, eyebrows, and/or eyelashes
  • Small stature
  • Diarrhea and/or vomiting in early childhood
  • Bone deformities
  • Dental and nail abnormalities
  • Juvenile cataracts
  • Cancer: skin (usually basal cell or squamous cell carcinomas) or bone (osteosarcoma)
By joining us and collecting donation you will help us continue to promote RTS awareness to the general public, healthcare professionals, and individuals affected with RTS and their family members. Your donations and participation will also enable us to sponsor annual conferences and regional seminars, keep the patient registry going and expand research activities worldwide.

Funding for extremely rare genetic conditions is incredibly hard to come by, organizations of all sizes have had their funding impacted by COVID-19, the harsh reality of the situation is that the larger organizations are seeking out the smaller funding this year more than they have in years past making it harder and harder for our leading researcher to secure the funding needed to keep her research alive. Please consider sharing and purchasing!

Click the link below to purchase the official RTS Virtual 5k, 10k, half marathon merch! May different styles and sizes to pick from!

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