- This event has passed.
2018 Ridin’ for Rhizokids (Virtual Event & Fundraiser)
May 25, 2018 - June 3, 2018
$40
Ridin’ for RhizoKids is a 10 day 100 mile virtual bicycle ride. The challenge is to ride 100 miles in 10 days on a road bike, mountain bike, stationary bike, Peloton, trainer, or even a motorcycle. We also have swimmers, walkers, runners, rowers, and others doing 100 minute workouts. This fundraiser is to help raise awareness for Rhizomelic Chondrodysplasia Punctata (RCDP) and money for upcoming clinical trials and fund research for these sweet children.
The cost is $40 which goes directly to RhizoKids International a 501(c)3, tax deductible and you receive a “cool” t-shirt. The event goes from May 25th-June 3rd and can be done in any time frame.
Register online at www.ridinforrhizokids.com from January 1- May 1.
Rhizomelic Chondrodysplasia Punctata (RCDP) is a rare, terminal metabolic genetic disorder that affects children and is present at birth. It is a form of dwarfism that causes many disabilities, including: severe developmental delays, cataracts, seizures, limited range of motion and a short lifespan. Children with RCDP have poor nutrition, resulting in limited growth. In addition to the severe disabilities the condition produces, these children have small rib cages. This makes it necessary to avoid respiratory infections, as they can compromise their breathing.
Many children with RCDP will never walk or talk, however they are joyful additions to their families because most spend their day laughing and smiling.
RCDP refers to the unique bone structure present in these children. Rhizomelic refers to the shortening of the upper arms and legs. Chondrodysplasia punctata refers to punctate areas of calcium in the growth plates. Many of the children with RCDP remain near infant size their entire life.
RCDP is such a rare disorder that there are believed to be around 75 cases worldwide at this time. Most families are given a very grim life expectancy for their RCDP child. 25% earn their wings during the neonatal period, 50% earn their wings before age 5 and 25% living past age 5 are labeled “long term survivors.”