Photo: courtesy Global Genes Project.
Meet sisters Cali and Ryann -- they have an undiagnosed rare genetic disease that prevents them from walking without walkers, talking and taking care of themselves. After dozens of tests, doctors are searching
for what is causing Cali and Ryann's neuro condition. Despite their challenges, these sisters are true fighters!!!
for what is causing Cali and Ryann's neuro condition. Despite their challenges, these sisters are true fighters!!!
Global Genes Project
About
Join the Hope movement! 1 in 10 people have rare & genetic diseases. Unite 1 Million people who support rare & genetic disease awareness. 7,000 different rare diseases exist - 95% have no treatments. Support 30 million Americans and 350 million globally!
Mission
Global Genes Project’s primary mission is to increase rare disease and genetic awareness worldwide and empower a vibrant rare disease community. The organization works to increase public and physician education, builds community through social media and is working to fund innovative ways to increase rare disease research.
Company Overview
The Global Genes Project is the leading global rare and genetic disease patient advocacy organization. Global Genes is building a worldwide rare disease and genetic awareness movement designed around a denim jeans theme and a Genes Ribbon™, which like the pink ribbon for Breast Cancer, has become the unifying symbol of hope for millions touched by rare diseases.
The organization is operated and managed by the R.A.R.E. Project (Rare disease, Advocacy, Research, Education).
Contact Info
| Phone | +1 949-680-7088 |
|---|---|
| nicoleb@rareproject.org | |
| Website | http://www.globalgenesproject.org I am with Global Genes Project. My late baby son, Andrew had campomelic dyplasia which is a rare gene. As I look at sisters Cali and Ryann with their crutches, I feel an urgency to help Takiri. If you have a face book account , would you help me vote for him to get a chance to walk.
My thing is I most want to be walking and running without my crutches.
I have cerebral palsy, it affects the muscles in my legs which is why I need crutches to help me get around. Horse Riding helps my muscles and balance
The nature of my goal
To achieve my goal I need to excerise alot to strengthen my muscles but it is hard work and I need help everyday to do this. I have horse riding lessons once a week, this is important+ helps me with posture, balance, rhythm and muscle tone, It has been a huge benefit to me, I get a good workout, my body feels better afterwards and I am much more confident in myself. I ride my horse really well and I hope to be in the paralympics one day. I need lots of financial support to make my goal happen. |
1 comment:
I feel so terrible for these children. I do wish them all the best and I hope they have whatever help they need. I will go now and check out the facebook link.
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