# Cure IBM: Growing Research and Awareness for the Common Muscle Disease By Taylor Kane May 21, 2021 • 3 min read _Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023._ Cure IBM is a testament to the fact that small organizations can make a big difference in research. IBM is a rare muscle-wasting disease that typically occurs in mid to later life. The progression of the disease is usually very slow, with patients becoming unable to walk 15 years after symptoms first occur. Some lose the ability to use their arms and legs, and swallow. While the cause of IBM is unknown, Cure IBM has made strides in supporting research for the condition, having garnered over $250,000 of funding for research and involving itself in a research project regarding hand function in patients with IBM. Cure IBM has made this investment in research possible by founding two IBM research funds and participating in the 2019 and 2020 Million Dollar Bike Ride events organized by Orphan Disease Center of the University of Pennsylvania. They will also be participating in the Million Dollar Bike Ride in 2022! Still, as founder Kevin Dooley explains, “The inclusion body myositis community has large unmet needs.” ”IBM is the most common acquired muscle disease in people over the age of 50, but most people, including doctors, have never heard of it.” This is why the organization’s two main goals are to fund another research grant and to raise awareness of IBM by sharing information with medical professionals and the general public. Kevin emphasizes the many misconceptions surrounding IBM, such as that it is simply a disease that causes older people to become unable to walk. He explains that the disease is much more severe than meets the eye: “People lose the use of their hands, and may not be able to dress themselves, hold a glass of water, or feed themselves.” “Many people with IBM find swallowing difficult or impossible, and some need to have a feeding tube,” he describes. “Choking is a constant threat for many, and some die from aspiration pneumonia after food or liquids goes down into their lungs.” Thankfully, Kevin, himself, is still able to walk and loves the outdoors and hiking. Before he decided to become a doctor, he studied nature and was skilled at identifying plants. He notes that he is able to remain confident despite the progression of his condition having met people with advanced IBM “who have inspired [him] by showing [him] that it is possible to have a happy, productive life in spite of their disabilities.” To Kevin, research is key; hence his enthusiastic praise for AllStripes and Cure IBM’s partnership to grow the AllStripes IBM research program. “AllStripes excites me because of its innovative approach to helping rare disease communities. Rather than focusing on an individual drug or therapy for IBM, AllStripes is laying the foundation to support the efforts of many pharmaceutical companies and researchers.” Kevin further explains that the easy, organized and secure access to medical records is certain to serve patients with IBM. Most importantly, Kevin believes AllStripes “enables patients to help themselves.” For more information about Cure IBM and to stay updated on its initiatives, check out the [website](https://cureibm.org/), [blog](https://cureibm.org/inclusion-body-myositis-blog/), [Facebook](https://www.facebook.com/Cureibm/) and [Twitter](https://twitter.com/cureibm) accounts. ## Create a List - List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records. #### Ensure You Have the Appropriate Legal Status It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own. #### Gather and Organize the Medical Records in One Place It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins. #### Review the Medical Records to be an Informed Advocate The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.