NAM E OF ORGANIZATION: Breathe with MD, Inc.
WHAT LGMD SUB-TYPE DOES YOUR ORGANIZATION FOCUSES ON:
Breathe with MD focuses on all forms of neuromuscular diseases (NMD) including Limb Girdle Muscular Dystrophy (LGMD).
IS YOUR ORGANIZATION A NON-PROFIT? IF SO, WHAT TYPE:
Yes, we are a501(c)(3) nonprofit public charity
WHAT INSPIRED THE CREATION OF YOUR ORGANIZATION:
Breathe with MD was founded by Andrea L. Klein in memory of her sister Cheryl Lewis who died on Klein’s 33rd birthday at age 38 from inappropriate care for Muscular Dystrophy (MD) related respiratory failure in 2007. When Klein met more who had been affected by the same medical errors, she realized there was an immense need for respiratory education in the NMD community. She wanted a means for her sister’s story to reach more individuals and families affected by NMD and to prevent another family from suffering a similar loss. Breathe with MD started out as an informative Facebook page in 2014. Soon after, a need was seen for a separate Facebook support group and later a website. Breathe with MD sponsored Dr. John R. Bach’s presentation at The Speak Foundation’s 2015 Conference for Individuals with NMDs and continued to grow its following and refine its mission. In 2018, Klein and her husband Anthony had saved enough of their own personal finances to take the legal action necessary for the organization to become “Breathe with MD, Inc.,” a Tennessee nonprofit corporation. In February of 2019, they received their federal tax exemption through the IRS as a US registered 501(c)(3) nonprofit public charity.
WHAT IS YOUR ORGANIZATION’S MISSION:
The Breathe with MD, Inc. mission is “to educate about breathing muscle weakness and its symptoms; testing; and appropriate intervention options (assisted ventilation and mechanically assisted cough). Our focus is on non-invasive ventilation. Through our educational efforts, we spread awareness that NMD affects more than mobility, and we teach about the dangers of Carbon Dioxide (CO2) retention and inhalation of supplemental Oxygen (O2) without ventilation assistance.”
WHAT SERVICES DOES YOUR ORGANIZATION PROVIDE:
In addition to the educational information on the Breathe with MD, Inc. website, the organization finds and posts articles, videos, and other educational items on three social media platforms (Facebook, Twitter, and Instagram). They also have a YouTube Channel with videos and animated educational graphics that Breathe with MD, Inc. develops. Breathe with MD, Inc. sponsors and administers a Closed Facebook support group called “Breathe with MD Support Group” for those living with NMD and their loved ones. It’s a supportive community with more than 1,000 members who use non-invasive ventilation, invasive ventilation, other breathing muscle aids, or no breathing muscle aids. Only members of the group can see and respond to group posts. As funding allows, Breathe with MD, Inc. attends patient and family NMD conferences, support groups, and similar programs to deliver a message based on the patient perspective, quoting supporting medical literature. Attendees not only hear an informative message, but they receive free laminated respiratory information wallet cards, printed literature, and sometimes get to enter a drawing for a give-away.
WHAT IS YOUR ORGANIZATION MOST PROUD OF:
Breathe with MD, Inc. is most proud of how many individuals living with NMD say they have a better understanding of breathing muscle weakness and the options for care because of the website, social media posts, and/or their membership in the support group. Some have said this literally saved their life. Others have said they were terrified of starting ventilation assistance until they found Breathe with MD, Inc. This makes fulfilling a mission all the more satisfying when it’s evident that the organization has a positive impact on the community it serves.
WHAT DO YOU WANT THE WORLD TO KNOW ABOUT YOUR ORGANIZATION:
Breathe with MD, Inc. is funded on individual donations and is volunteer led by individuals in the NMD community. They are passionate about their mission and committed to achieving it.
HOW CAN PEOPLE BECOME INVOLVED IN SUPPORTING YOUR ORGANIZATION:
Breathe with MD, Inc.’s greatest need is funding for “outreach events” and the printed materials shared at them. It’s at these events that individuals living with NMDs hear what is often a life-saving message about what can make their respiratory condition worsen. They leave empowered and equipped with knowledge to navigate their respiratory muscle weakness journey and to self-advocate for their own appropriate respiratory care. Breathe with MD, Inc. is happy to receive even the smallest donation. They can be made at the Breathe with MD, Inc. Facebook page (https://www.facebook.com/BreatheWithMD/) via the Donate button, or on the website at https://breathewithmd.org/donate.html. If donations aren’t possible, there are other helpful things to do such as choosing Breathe with MD, Inc. as your supported charity on Smile.Amazon.com, selecting the organization as your “Favorite” on eBay, and/or purchasing any of the items listed with a portion of their sales to benefit the charity. Learn more at https://breathewithmd.org/other-ways-to-help.html. To grow and reach more, Breathe with MD, Inc. needs volunteers to assist with tasks like fundraising, curating content for social media platforms, and coordinating outreach events.
WHAT IS THE BEST WAY TO CONTACT YOUR ORGANIZATION: