We need your help! On Thursday, February 28th, we'd like to ask that all of our
friends, family and supporters join us in observing Rare Disease
Day.
For those of you who have followed Kaitlyn's Korner, you probably already know that Niemann-Pick Disease is among one of the 7,000 rare diseases that exist. Kaitlyn was one of only five children in the United States living with Niemann-Pick, Type A before she passed away. The National Institute of Health estimates that 50% of people affected by rare diseases are children, making rare diseases one of the most deadly and debilitating for children worldwide.
So, what can you do to show your support??
- Post Kaitlyn's picture on your Facebook page. Heck, use it as your profile picture for even more exposure! Make sure to tag @GlobalGenes in all your pictures
- Wear your blue PERSEVERE wristband or t-shirt and post pics to my/your Facebook page wearing them along with messages of support for Rare Disease Day
- Join the Global Gene's Project's Wear That You Care movement and wear your favorite pair of blue jeans in support of rare and genetic disease awareness
- If you're so inclined, make a donation to the National Niemann-Pick Disease Foundation in memory of Kaitlyn Kay Bourgeault, NPD, Type A. Donate here: National Niemann-Pick Disease Foundation
So glad to see another post. I would love to post your sweet girls picture! Still praying for you all often.
ReplyDeleteI will remember all of you on this day, many are praying for each of you. My son saw a story in the Charlotte paper about 2 young women with a rare disease and said 2-28 was rare disease day. I reminded him of Trek and all the little ones. I didn't know of this until I read about your sweet little Kaitlyn.
ReplyDeleteWearing BLUE today in honor of your daughter Kaitlyn!
ReplyDeleteBeen thinking of your family lately. Praying for you all.
ReplyDeleteWILL ONE CURE WORK FOR ALL RARE DISEASE STRAINS OR WILL MULTIPLE “CURES” BE NEEDED?
ReplyDeleteResearch will tell us the answer to this. There are several factors that may influence the effectiveness of a cure, including how long the person has been infected; the route of infection; the person’s age when he or she acquired RARE DISEASE, as well as current age; how soon they started antiviral therapy; and whether they have opportunistic infections or other RARE DISEASE-related health problems. Depending on the nature of the cure, the RARE DISEASE strain may also influence the type of cure needed. We might start by curing some of the people some of the time. It might be that there won’t be a single cure for all, I am happy to thank the Dr OKEYTO for helping me get cured of my RARE DISEASE, for like 4 yrs Now I have been suffering from RARE DISEASE , but one day as I was surfing through the Internet I met a post about a lady who was cured by Dr OKEYTO so I decided to give it a trial, to see if he could save my life Luckily for me I was cured by him. I cannot stop thanking him for what he has done for me if you are into similar problem you can contact him via: email dr.okeytoherbalcure@gmail.com or call him on his phone number (+2349050141440/whatsapp him)
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