Rare Disease Fundraiser to Help Children - NEEDS YOUR UPVOTE!

in #en3 years ago (edited)

I am the father of a 12 year old girl with a very rare disease. She was diagnosed with Leigh's Syndrome when she was 9 years old. Most kids with Leigh's Syndrome do not live to be 9 years old. My daughter Darien is lucky in that sense, but many kids aren't so lucky. Most people are not aware of this, but "Rare" diseases are not so rare, they just take many different shapes. My daughter Darien is just one of 7 kids in the world with her specific mutation. Because each case is different we have a lot of "rare" diseases, but a lot of these diseases are rare. When you total them up they represent a large portion of the population.

  • There are approximately 7,000 different types of rare diseases and disorders, with more being discovered each day
  • 30 million people in the United States are living with rare diseases. This equates to 1 in 10 Americans or 10% of the U.S. population
  • Similar to the United States, Europe has approximately 30 million people living with rare diseases. It is estimated that 350 million people worldwide suffer from rare diseases
  • If all of the people with rare diseases lived in one country,  it would be the world’s 3rd most populous country
  • In the United States, a condition is considered “rare” it
    affects fewer than 200,000 persons combined in a particular rare disease group. International definitions on rare diseases vary. For example in the UK, a disease is considered rare if it affects fewer than 50,000 citizens per disease
  • 80% of rare diseases are genetic in origin, and thus are present throughout a person’s life, even if symptoms do not immediately appear

Due to the scarcity of people with any particular condition the drug companies will not fund research into these diseases. Luckily their are non-profits that do this research, but this research is expensive and requires the help of the community. It is my hope that the Steem community can help starting with this new crowdfunding platform.

With your support it is my intention to do several things:

Support research into rare childhood disorders

Help needy families with disabled children

Explore alternative technologies, that may help these children

You can also help me by upvoting me on Steemit, one of the reason I decided to do this was to generate funds to further this cause. So please follow me and upvote my posts as much as possible. I appreciate your consideration and you help. Together we can eliminate these rare diseases.


You can also help bay sending me SP if can can afford it. This is the gift that will help forever more. If you have cash to donate then do it here - http://belnapfoundation.org/

I am the curator for the crowdfunding community upfundme here on steemit with memebers funding for all sorts of things.

You can find out more and the rules here.

Enjoy your time here:)

Should I repost in the proper category? Honestly I lost a little faith in humanity only getting 26 upvotes. I mean people didn't have to actually spend anything real and they still didn't vote. Whales got 3 times more votes than our children.

Yes, if you post with upfundme as your primary tag and give the cause a target goal in steem or SBD you will get support from the upfund me account, posted daily it will add up.

Thank you for the advice

Sorry to hear about this. I hope you achieve what you set out to do. good luck, and all the best for the future.

Upvoted and resteemed for what it might do. I don't have much pull but maybe it reaches someone who does.