Today we’d like to introduce you to John Muller.
John , we appreciate you taking the time to share your story with us today. Where does your story begin?
We are an all-volunteer 501(c)(3) nonprofit, built from the ground up. Every donation and fundraiser directly supports medical research for neuromuscular disease treatments. Our mission is simple: support the science that brings hope.
GettingUp.Org, Inc. works to help educate the public and bring attention to rare adult onset conditions, specifically Inclusion Body Myositis. Our primary goals are to find treatments and cures through supporting research, identifying needs, advocating, and serving patients where we can. We are a 501(c)(3) nonprofit and appreciate both your volunteer time and financial support.
100% of all proceeds go directly to medical research to find treatments and a cure for these types of insidious ailments. You make research possible.
GettingUp.Org, Inc. is a 501(c)(3) nonprofit
Rare diseases are inclusive and do not discriminate. Anyone can get a rare disease regardless of race, color, religion, or national origin. One of those rare diseases is called Inclusion Body Myositis (IBM). Join our team to fight IBM and bring attention to adult onset rare diseases.
There are amazing advancements being made everyday in medicine but most of the research money is being spent on more profitable and more common diseases. Since many millions of people suffer from heart disease and various cancers, hundreds of millions are spent there. Not much is spent (comparatively) on rare diseases; there are so many needs in our society like homelessness, affordable housing, food insecurity, clean water, education, etc. These are all important – we work to bring attention to another important need. There are 35 million Americans with rare disease and 350 million people world wide suffering without treatments.,
IBM is thought to be an autoimmune disease, but nobody is really sure. Although there are places around the world that study myositis the advancements have been slow.
To help bring attention to this insidious disease and help fund research I started an organization GettingUp.Org. I established the corporation, filed for nonprofit status, set up the website (www.gettingup.org) and was up and running by October 1st, 2022. See this site if you’re interested in helping, there are many ways to support IBM at GettingUp.Org.
John Muller, Founder
GettingUp.Org, Inc.
16john2224@gmail.com
1+712-371-9131
Fund raising includes annual golf tournament, 150 songs on streaming platforms, 4 books on Amazon, vinyl records of rare disease music, auctions, other
We all face challenges, but looking back would you describe it as a relatively smooth road?
I established GettingUp.org, Inc. From scratch. Did the legal work. Filed all documents to secure 501(c)3 status, built website, set ways to collect donations. Working closely with university of Kansas Kansas City medical research teams, participant of multiple fda trials. On the first of October I celebrate 5 years since correct diagnosis after multiple misdiagnosis from other local medical centers.
Plus the challenge of writing producing music, books, vinyl albums, fund raising, golf tournaments, etc.
Examples: https://www.gettingup.org/shop-with-purpose-find-a-cure
Thanks for sharing that. So, maybe next you can tell us a bit more about your business?
We are an all volunteer 501 C3 nonprofit educating for Rare disease and research.
Let’s talk about our city – what do you love? What do you not love?
I love Kansas City! It feels like a small town where neighbors all know each other. Kansas City’s appeal is less about one flashy headline and more about a rare combination: major-metro amenities at a midwestern cost, short commutes, and a civic culture that still feels like a place people actually live rather than just pass through.
Sports, food, and culture that punch above the city’s size. I was fortunate to attend a match at the.Current women’s soccer stadium, I was pleasantly surprised at what a great facility it is. It’s unique just like Kansas City.
Places like Overland Park, Olathe, Lee’s Summit, Leawood, and Blue Springs regularly show up on “best places to live” lists for schools, safety, parks, and everyday convenience.
I don’t like the tremendous amount of trash and garbage in the city – it can be embarrassing driving through the inner-city viaduct and I-70. When picking up people at the airport and driving out to Lee Summit, instead of going through the city, I go around 435 to avoid that ugly view..
The hot humid summers, the bitter cold winters – but the spring and fall is the finest in the country.
Contact Info:
- Website: https://www.gettingup.org
- Instagram: https://www.instagram.com/GettingUp_org?stkn=OGxqOWQwdG55OHh3
- LinkedIn: http://www.linkedin.com/in/GettingUp
- Youtube: http://www.youtube.com/@GettingUpIBM
- Other: https://www.gettingup.org/our-sponsor-partners
