My Nonprofit Reviews

When my late husband Dan Miller’s diagnosis migrated from Parkinson’s Disease to Multiple System Atrophy in 2014, I turned to the MSA Coalition to learn more about what we faced. I found a wealth of information on the Coalition website, and soon had received DVDs of past annual conferences where I could hear the top experts answer our most urgent MSA questions. Coalition-sponsored Facebook pages became another critical source of support during these tough times. Some of the connections I made there even became friends for life. I was stunned when I realized these great resources were basically the work of dedicated volunteers. And when we decided to donate Dan’s brain for MSA research, we turned to the Brain Support Network, another group I only knew of through the Coalition. In the nearly five years since Dan died, I’ve grown steadily more impressed by the organization’s constant evolution in serving the MSA community and supporting critical scientific research through grants. Its website also continues to expand, and those MSA Facebook pages? They’re still humming with essential support and information. Meanwhile, Coalition leaders are hard at work at further improving patient support. What an important gift for families like mine! I do pray for the day when we all can celebrate effective treatments to slow progression of MSA and, better still, a cure. I’ve no doubt that when those moments come, the Coalition's indefatigable team will have played a key role. It’s just what they do, plain and simple. And I, for one, am forever grateful.

When my late husband finally received his MSA diagnosis in 2014, neither of us knew much about the disease. We didn’t know anyone else with it, either. The MSA Coalition quickly became our mainstay for information and support. Though I never made it to an annual MSA convention, I “binge watched” the past conventions I could find and instantly felt better equipped to face what was ahead for my husband and our family. The MSA Facebook groups became lifesavers, too. I could share my deepest frustrations or darkest thoughts, and someone else always understood what I was going through. Those same Facebook groups also connected me to another MSA family living less than a mile from us. We two wives became a support group of two! I lost my husband in 2018. Last year, I recognized one way I could help repay all the MSA Coalition folks who had supported us was to help launch a support group in my city. And we did, with the Coalition’s support and guidance. What a difference it makes to know you aren’t alone on this journey. Thank you, MSA Coalition, for being there for us and some many others.