“Our life’s mission is to bring awareness to myositis, a group of rare, incurable autoimmune diseases, to honor our dad and to fight for those who need our support.”
Sisters, Lauren and Jenna Landman set out to make an impact for the myositis community after they lost their dad, Bob, to Dermatomyositis (DM) in 2015. DM is one of a group of rare muscle diseases called inflammatory myopathies, which are characterized by chronic muscle inflammation accompanied by muscle weakness. Often, patients are misdiagnosed and in their dad’s case, his multiple misdiagnoses delayed potential treatments that could have prolonged his life. Bob’s sudden passing in 2015 at the age of 62 left their family with many unanswered questions and a longing for a community to understand their grief.
In their search for answers, they stumbled upon a 501(c)3 nonprofit organization called Myositis Support and Understanding (MSU), which was founded by Jerry Williams, a patient living with DM in 2015. MSU aims to help improve the lives of and empower those fighting myositis through education, support, awareness, advocacy, and access to research. MSU is also entirely run by volunteers, who are also patients living with a form of myositis. Their support groups for both patients and care partners build a much-needed community to help those suffering from such an isolating illness. Immediately connecting with their mission, Lauren and Jenna were compelled to take their dad’s passing and turn it into something positive. And they did just that.
His journey with myositis has already made a tremendous impact for the myositis community but if we connect one more family, care partner, or individual living with myositis with MSU, then we did our job and our dad would be proud.
In 2019, they created the Myositis Empower Walk, a community-building and fundraising event in memory of their dad, which directly benefits MSU. The first annual walk was held at the Discovery Park in Henderson and brought in over $3,000. Due to the pandemic in 2020, the event was hosted both in-person and virtually, which connected the Landman family with people from all over the world and fundraised over $18,000. Last year’s walk brought in over $25,000, and included inspiring speakers in the myositis community – MSU’s Medical Advisor Dr. Salman Bhai, MD, and Olympian and fellow Myositis Warrior, Tri Bourne and his wife, Gabby.
This year’s walk, the 4th Annual, will be on Saturday, October 8th at Discovery Park in Henderson, and the Landman family would like to personally invite you, your family, and your friends to join them on this special day. Walk registration and pre-walk festivities will begin at 10:30 AM followed by the start of the event at 11:00 AM. Come as you are and enjoy food, fun activities, and learn how your support is making a difference and giving hope to the myositis community. Donations will be accepted at the walk, and online prior to the event at www.myositisempowerwalk.org. All gifts are tax-deductible and will help the Landmans reach their fundraising goal of $35,000. You can join from anywhere in the world via the interactive live stream!
When asked what they anticipate for this year’s Myositis Empower Walk, Lauren and Jenna are hopeful that they’ll be able to connect more people to MSU’s mission and honor their dad’s memory in a special way. “His journey with myositis has already made a tremendous impact for the myositis community but if we connect one more family, care partner, or individual living with myositis with MSU, then we did our job and our dad would be proud.” – Lauren and Jenna Landman
View this article in Pinpoint publications
For more information about the Myositis Empower Walk or to stay in touch with the Landman Family, please visit www.myositisempowerwalk.org and follow them on Instagram @myositisempower.