National Unbreakable Spirit® Walk-n-Wheel: Baltimore 2018

Skylar, age 4, type 1
Skylar, age 4, type 1

Team Skittles

Dear Friends and Family,


Please support Team Skittles as we participate in an Unbreakable Spirit® Walk-n-Wheel to benefit the thousands of children and adults with "brittle bone disease," including Skylar, who are served by the Osteogenesis Imperfecta Foundation.

Skylar was diagnosed with OI, type 1 in 2017, after sustaining 4 fractures from little to no trauma.  She has now had 7 fractures, broken teeth, a dislocated elbow, progressing scoliosis, and urinary reflux.  She also has lax ligaments and falls often, so has to be super careful. She is considered mild by OI standards.  There is currently no cure, so let's get together to help the OIF fund some research to find one eventually! 

 

Osteogenesis imperfecta (OI) or Brittle Bone Disease is a complicated, variable and rare disorder. Its major feature is a fragile skeleton, but many other body systems are also affected. OI is caused by a mutation (change) in a gene that affects bone formation, bone strength and the structure of other tissues. It is a life-long disorder. OI occurs equally among males and females and in all racial groups. It is estimated that approximately 25,000 to 50,000 people in the U.S. have OI. With good medical management and supportive care, the majority of people who have OI will lead healthy, productive lives and can expect an average life span.
People with OI experience frequent broken bones from infancy through puberty. The frequency typically decreases in the young adult years but may increase again later in life. Respiratory problems including asthma are often seen.

Other medical characteristics and issues include:
Bone deformity, and bone pain.
Short stature.
Spine curves.
Low Bone Density.
Loose joints, ligament laxity and muscle weakness are common.
Distinctive features of the skull including late closing fontanels, and head circumference greater than average.
Hearing loss may begin in the early 20s and by middle age is present in more than 50% of people with OI.
Brittle teeth (called dentinogenesis imperfecta or DI) are seen in 50% of people who have OI
Respiratory problems including asthma; may be aggravated by chest wall deformity and/or spine deformity.
Vision problems including myopia and risk for retinal detachment
Skin hyperlaxity; easy bruising.
Cardiac issues.
Fatigue.
Basilar Invagination a serious neurological problem is seen in some people with the more severe forms of OI.
Skin, blood vessels and internal organs may be fragile.


The OI Foundation's National Unbreakable Spirit® Walk-n-Wheel, scheduled for Thursday, July 12, 2018, will be held at the Inner Harbor in Baltimore, Maryland in conjunction with the OI Foundation's biennial National Conference. I am raising pledges to fund research into osteogenesis imperfecta (OI) and provide information and support to the individudals affected.
50,000 people in the United States are affected by osteogenesis imperfecta (OI), a rare genetic disease that makes bones fragile and easily broken. A person living with OI may experience hundreds of painful fractures over a lifetime. Infants with OI are often born with multiple broken bones. In severe cases of OI, a cough can break an adult's rib. Each person with OI is unique, with different fracture rates, a varied range of related health issues and his or her own path through life. Yet there is one thing every person living with OI has in common: an Unbreakable Spirit®
The mission of the OI Foundation is to improve the quality of life for people affected by OI through research to find treatments and a cure, education, awareness, and mutual support.
Please visit my personal web page and make your most generous gift possible.

I greatly appreciate your consideration and support!

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Thank you to our 2018 OI Foundation

National Unbreakable Spirit® Walk-n-Wheel Sponsors!!

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