Tag Archives: UMDF

Mitochondrial Disease Awareness Week 2017

Every single day is mitochondrial disease awareness day for our family, but it just so happens that global mitochondrial disease awareness is celebrated annually during the third week of September. This year, Mitochondrial Disease Awareness Week is September 17-23.

Every year for the last four, we’ve tried to do something a little more to help spread awareness throughout our community and beyond by requesting Kentucky’s Governor to issue a Mitochondrial Disease Awareness Week proclamation, writing this article for The Mighty Publication, What is Mitochondrial Disease? An Explanation for Non-Scientists, selling t-shirts with our recognizable #Hope4KB hashtag, and sharing #Hope4KB photos people send us from around the globe.

Screen Shot 2017-09-01 at 10.22.43 AMThis year, Dave has been invited by the United Mitochondrial Disease Foundation (UMDF) to lead a webinar called “Advocating In Your State,” during which he’ll provide helpful insight into how we passed the Kentucky ‘Mito Cocktail’ law as well as ways to help others try the same in their own state. This webinar is scheduled for September 20, 2017, during Mitochondrial Disease Awareness Week. Interested participants can register with the UMDF here.

Some of you may have noticed that Katherine’s therapy trike riding video is becoming a big hit on the Internet. Please send us any links or videos of it being shared. Every time it’s shared and the words ‘mitochondrial disease’ are mentioned, she is spreading more awareness.

Here are a few links we’ve seen so far:

Right This Minute (Viral video show)

Nieuwsblad (Belgian newspaper)

We will be sharing more awareness resources over on our Facebook page Hope for Katherine Belle this month, so look for our posts to read and share.

Ways To Help Us Raise Awareness

1. Share Katherine’s Facebook page, Hope for Katherine Belle.

2. Share the link to our non-profit (NUBPL Foundation) Facebook page, NUBPL.org.

3. Send us your #Hope4KB photos by posting them to Katherine’s Facebook page. We really want to see YOU and love adding these photos to our ever growing album. Green is the color for the mitochondrial disease awareness ribbon. This is a FREE and fun way to bring awareness to mitochondrial disease and #Hope4KB, so make a sign, snap a photo, and share it with us. And ask friends to consider doing the same. We spread awareness by talking about it with others – tell people about Katherine and her story so you can help put a real face to this horrible disease.

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Arabella, Making Memories for Arabella
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Alex and Blue, Alex and Blue Fighting Mito Together

4. Add a Mitochondrial Disease Awareness photo frame to your Facebook profile picture to let everyone know about it being awareness week. Here’s an example of one we used, which you can get by clicking here:

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5. Make a tax-deductible donation to support mitochondrial disease research and fund treatments/cures (there are currently ZERO FDA approved treatments for Mitochondrial Disease): Katherine Belle Mitochondrial Disease Research Fund at the Children’s Hospital of Philadelphia.

6. Katherine has made it on the EllenNation website (The Ellen Degeneres Show). Register, vote, comment, and share (NOTE: You can only vote once overall – voting more than once will result in a negative vote). Click here to vote for Katherine Belle and raise awareness for mitochondrial disease.

7. Share this blog post with your friends and family.

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Summer Update

It’s hard to believe Katherine turns four in just a few days (July 9th) and starts Pre-K on August 12th.  We are very excited about her attending Dave’s alma mater, Model Laboratory in Richmond.

We attended the United Mitochondrial Disease Foundation’s (UMDF) Mitochondrial Medicine Symposium 2015 in June and learned a great deal about the latest research. We spent time with family and friends living in the area and look forward to going back to DC soon.

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Katherine has been accepted for the National Institutes of Health (NIH) EPI 743 clinical study for mitochondrial diseases, which she will begin on August 3 in Bethesda, Maryland. The study lasts a year – 6 months she will receive a placebo and 6 months EPI 743. We will travel there multiple times over the next year for testing and monitoring. She will continue to take her “mitochondrial cocktail,” which is a compounded liquid consisting of CoQ10, L Carnitine, Lipoic acid, Thiamine, and Riboflavin. She started taking this cocktail in February 2015 and we have seen improvement with her muscle tone and shakiness. In fact, she is now able to stand independently for several seconds at a time. (Our insurance denied coverage of this $250/month cocktail, but Dave appealed and won. We learned insurance covers only 10% of these prescriptions.)

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In the meantime, we are enjoying the last days of summer before school starts in the fall.  Katherine has enjoyed fun days with cousins and friends, ice cream, the beach and pool, late nights, sleepovers with grandparents, family reunions, and everything else that fills childhood summer memories.

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We wish you a very happy 4th!

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