Tag Archives: Mito

#TogetherWeFightMito

I’ve been fortunate to have found my “mitochondrial disease mom tribe” through various online support groups, and recently we started brainstorming ways to raise more awareness to fund research.

Although our children fight different types of mitochondrial diseases, we all share similar stories. We’ve all looked into the tear-filled eyes of doctors telling us our babies are very sick, that the disease doesn’t have any FDA approved treatments, no cures, and that we should spend as much time with our children as we can.

Watching our children battle progressive diseases with no treatments or cures is soul-crushing. However, there are several wonderful mito organizations and online patient communities for support, loving and dedicated mitochondrial disease doctors who treat us and guide us, passionate researchers dedicating their lives to cure it, and fierce advocates who help us raise awareness around the world.

And, there’s hope.

Hope that the most common disease most people have never heard of becomes a household name; hope that people realize that curing mitochondrial dysfunction helps us all; hope that this becomes the next frontier of medicine; hope that the world can come together to raise our collective voices to fund mitochondrial disease research before our children die.

Mitochondrial dysfunction exists in all chronic diseases, and is the cause of many familiar diseases, such as Alzheimer’s, Parkinson’s, Autism, ALS, Huntington’s, muscular dystrophy, epilepsy, chronic fatigue, diabetes, fibromyalgia, and cancer. It is a major factor in all problems associated with aging – loss of muscle, declining eyesight, lack of energy, wrinkling, inability to heal, mental decline, and organ failure. Someone in her 70s has only about 20% of the functioning mitochondria she has in her 20s. That’s why research is important for everyone, not just our children. Everyone will have mitochondrial dysfunction eventually, so if we learn to boost their function, to boost the healthy mitochondria, or stave off the detriments, it could be a breakthrough for all of us.

We are just parents trying to save our children. It’s really that simple. Each day we shout out our stories to anyone who will listen with the hope that today will be the day that the world listens and funds this critical research.

One day, not long ago, one of the moms from our group was discussing how the recent international attention for a very beloved mito angel made her feel less alone in her own journey, when a lady responded with a simple, yet powerful hashtag, #TogetherWeFightMito.

And from that meaningful hashtag, the Together We Fight Mito awareness campaign was born. A dozen parents, and one mighty advocate, banded together online and across continents to design a global platform that unites and energizes the international mitochondrial disease community to come TOGETHER to harnesses the passion and determination of every mito patient and advocate around the world. Together, we fight mito. Together, we cure mito. #TogetherWeFightMito

Our greatest hope is that everyone will become advocates for mitochondrial disease. This campaign is on-going, so we hope the momentum built this week will continue to grow in the coming months.

We are asking families to share photos with us of their loved ones fighting mitochondrial disease so we can show the many faces of mito. We are also asking both public figures and regular folks from around the world to come together and share photos of themselves holding #TogetherWeFight signs and donate $1 (or more) to fund research.

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Remember the ALS Ice Bucket Challenge? Of course you do! These seemingly silly challenges not only raise awareness, but they also produce results. Three scientific breakthroughs resulted from the ALS Ice Bucket Challenge. We need something similar for mitochondrial disease and the time is NOW to make that happen.

So grab your markers and paper, and make a #TogetherWeFightMito sign to hold while you snap your selfie. Then, copy and paste this message with your photo and post it on your social media accounts:

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I just accepted the #TogetherWeFightMito #Selfie challenge and donated to fund critical mitochondrial disease research, and I challenge YOU to do the same.

1) Make a #TogetherWeFightMito sign and take a photo holding the sign
2) Follow Together We Fight Mito at https://www.facebook.com/TogetherWeFightMito/
3) DONATE $1 or more to fund critical #mito research. Tax-deductible donations here: https://www.umdf.org/togetherwefightmito
4) POST YOUR photo (make sure the privacy setting is PUBLIC)
5) CHALLENGE FIVE friends and TAG them to do the same
COPY & PASTE  this message when you share your #TogetherWeFightMito #selfie
Let’s raise our voices TOGETHER! Together, we fight mito. Together, we cure mito. #TogetherWeFightMito

This campaign was launched one week ago today. This has been the response so far:

 

Follow Together We Fight Mito on Facebook and Instagram.

Photos can be upload on the Together We Fight Mito Website

Together We Fight Mito Campaign in the News:
Family raises awareness as daughter fights rare disease
Georgetown family’s fight against mitochondrial disease

Click here to purchase a #TogetherWeFightMito (Proceeds fund research)

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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.