Community Voice: Why We Decided to Name MDA in Our Wills

Probably like you, recent years have altered our lives in ways both expected and completely unforeseen. Some of these changes have led us to review certain areas of our lives, especially our plans for the future.

Donna Albrecht and her daughters, Katie and Abby (circa 1980).

When our daughters were born, we saw a lawyer and wrote wills to protect them in the event that we couldn’t. While they were still infants, they were diagnosed with spinal muscular atrophy (SMA) and it became critical to identify guardians and protect their financial interests if we were to die. In addition, we had other concerns that weighed on our minds. What if the doctors were right and our girls didn’t survive us? We still had aging family members we would want to assist if we were childless, organizations and charities that were important to us, and more. Our wills outlined our wishes in many of those possible outcomes.

For decades, we were honored to raise our daughters; much longer than originally predicted. We gave them the very best lives possible, and we had help. Lots of help. Much of that help came from the Muscular Dystrophy Association.

• MDA’s help started with a diagnosis after years of uncertainty. MDA doctors had expertise with this condition. They gave it a name and could tell us what to expect.
• The MDA Care Center helped us acquire some basic equipment we desperately needed.
• MDA gave us practical help. Professionals at the Care Centers taught us ways to handle our non-standard problems that other parents didn’t understand.
• The MDA Telethons were more than a dramatic fundraiser. Watching them, and later participating in our regional MDA Telethon, gave us a sense of community in a world that kept reminding us that our family was . . . different.
• On the larger stage, MDA helped change laws and social attitudes.
• On our personal level, MDA helped us successfully negotiate with schools that made it painfully obvious they would prefer not to deal with the accommodations our daughters needed.
• MDA Camp!!! Camp provided annual experiences for our daughters in learning independence skills and making friends with peers who shared their disability. Camp was also a true opportunity for us as parents to relax and refresh, knowing our beloved daughters were in a safe, caring place.

For all these reasons and so many more, we will always be deeply grateful for the people and help from MDA.

That gratitude played a role in our estate planning.

We realized recently that major changes in our lives meant it was time to review our wills. Our daughters have passed and so have our relatives who might have needed our financial assistance in their old age. What were our priorities now?

In our earlier wills, we had a back-up position that MDA and a few other organizations were listed beneficiaries should those other commitments no longer exist.  When we sat down and talked about rewriting our wills, we realized that life and time had brought changes to some of those organizations. We saw changes in direction that made some organizations less relevant, another group we had been deeply committed to was failing for reasons that money could not change, and we had experienced a loss of connection with organizations we previously supported.

MDA was different. The commitment was still there. The research was bearing enormous fruit. Spinal muscular atrophy, which killed our daughters, can now be diagnosed at birth and treated, reducing or eliminating life-shortening disability. Current and planned research, patient care, and advocacy are vibrant and continue to have an undeniable impact on MDA’s families and their loved ones. And MDA Summer Camp! Kids who are living with neuromuscular disease still experience the joy of a summer camp designed just for them!

Like us, when your life is measured, you undoubtedly want to leave the world a little better than you found it. We know MDA’s research and patient care are not only current, but that they will continue to be needed for decades to come. That is why my husband, Mike, and I have named MDA as the primary beneficiary of our estate. For us, this is a way that we can honor the memory of our Katie and Abby, as well as help protect future families from the tragedies we have experienced.

We may not be able to change the world for everyone, but we can leave a legacy that makes the world better for countless children and adults in the future.