Triathlon for Dani

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Every year since 2007, I have run a triathlon to fundraise and raise awareness for a cause important to me. After a few years, Dylan joined me, and then two years ago, Hope even joined the team and became a triathlete! This year, we are all are fundraising in honor and support of our next-door-neighbor, church buddy, and sweet little friend, Dani Swoboda! Dani is 11 years old and has Rett Syndrome.

Rett is a rare, non-inherited, genetic postnatal neurological disorder that occurs almost exclusively in girls and leads to severe impairments. Dani is affected in every aspect of her life: the ability to speak, walk, eat and breathe easily. Dani was diagnosed when she was one and a half years old. Her parents had to fight to get her tested because they knew something was wrong.  Rett is so rare, doctors are not very familiar with its symptoms.


Please join us in supporting and raising awareness for sweet Dani!


- The Jones Family



What is Rett Syndrome?

Rett Syndrome is serious lifelong neurological disorder that is caused by random mutations in a gene called MECP2. Diagnosed almost exclusively in girls, symptoms typically appear in toddlerhood. Many children with Rett are unable to speak, walk or use their hands. Breathing problems, feeding tubes, seizures, anxiety, gastrointestinal and orthopedic issues are common.

Despite the debilitating nature of the disorder our girls are so much more than a laundry list of symptoms. Their beauty and their strength inspire and motivate us.

Rett Syndrome stands apart from other neurological disorders due to the dramatic reversibility of symptoms in animal models. Our confidence that Rett Syndrome is curable guides our every decision.

Learn more about Rett here.


Who is RSRT?

The Rett Syndrome Research Trust (RSRT) was launched in 2008 with a singular goal: to drive the development of treatments and cures for Rett Syndrome and related MECP2 disorders. As one of the few neurological disorders to demonstrate dramatic symptom reversal in the lab, Rett Syndrome has captured the attention of the world’s premiere university and pharmaceutical industry scientists. RSRT is operating at the nexus of this activity, leading and advancing the research agenda.

By funding the most Rett research worldwide, $35 million since 2008, we strive to put ourselves out of business as soon as possible.

Learn more about RSRT here.


Supporters (14)

  1. James & Mary Berrigan 
    1 year ago
    $50
  2. Dawn Zahorik 
    1 year ago
    $25
  3. Christine More 
    1 year ago
    $50
  4. Christine Cahill 
    1 year ago
    $50
  5. Mary Anne & Ed Berrigan 
    1 year ago
    $50
  6. Robert Kolka 
    1 year ago
    $50
  7. Jacquelyn Jones 
    1 year ago
    $50
  8. Virginia Labus 
    1 year ago
    $25
  9. Charles Ippolito 
    1 year ago
    $75
  10. Rebecca Telischak 
    1 year ago
    $25
  11. Melanie Nervegna 
    1 year ago
    $50
  12. Vance Ler 
    1 year ago
    $50
  13. Samantha Peterson 
    1 year ago
    $20
  14. Lynn Landsman 
    1 year ago
    $50

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