You are not alone: people are working to make a better life for individuals with Down syndrome

2014 DSL Awards Program  (note the staff, there were 4 when I joined the Board)

2014 DSL Awards Program
(note the staff, there were 4 when I joined the Board)

This past weekend, I had the unexpected honor of receiving an award for my service as Down Syndrome of Louisville’s past president. I share these remarks for a couple of reasons.

Friday was Down Syndrome of Louisville‘s (DSL) annual awards banquet. I was surprised to see listed on the program an entry for “Past President’s Award.” I was familiar with the awards given each year. This was a new one. I actually wondered if I was supposed to be giving an award to someone else as the Past President.

So, it was unexpected when Dan Moyers, DSL’s board president two terms before mine, approached the podium and delivered the following remarks:

Good Evening. I am here to present the “Past President’s Award.”

I am supposed to tell you a few of Mark’s many accomplishments, and so I will give you my version of the Mark Leach highlight reel. But I also want to share with you my favorite story about Mark.

First, the accomplishments:

• Mark’s service to Down Syndrome of Louisville began as a board member in 2005.

• Mark was elected Vice President in 2011, and elected President of the Board in 2012 and 2013.

• Mark’s tenure as President began as DSL achieved the status of a Kentucky Medicaid provider and extensively expanded services to our members. That year our DSL staff grew from 6 to 18, and our budget increased to $1 million dollars.

• Mark worked to increase the national profile of Down Syndrome of Louisville by serving on the Down Syndrome Affiliates In Action board, and by appearing as a regular guest on nationally syndicated talk radio programs like the Hugh Hewitt Show.

• On a personal level, Mark always ended every board meeting by asking all members to tell the group “one good thing” which usually involved each board member bragging about how proud they were of their child’s most recent milestones. According to current board members, the process always bonded and brought the group closer together, not only as a board, but as an extended family.

• On a professional level, Mark led the efforts to pass legislation in Kentucky for the Down Syndrome Information Act which was signed into law by Governor Beshear last March. This law requires all medical providers that share the diagnosis of Down syndrome with parents to provide them current information including a dedicated Down syndrome information website and refer the family to a local Down syndrome support organization.

• Mark takes pride in his leadership as a national and global ambassador for individuals endowed with Down syndrome. As a lawyer, bioethicist and parent, Mark has been invited to speak at the World Down Syndrome Congress in Dublin, Ireland, and the International Meeting of Obstetricians in Montreal, Quebec, as well as numerous conferences focusing on Down syndrome, medical genetics and obstetrics around the United States.

The problem is not getting Mark to speak. The problem is getting him to shut up. But we love him for that.

Before I tell you my favorite story about Mark, I want to pause and say thank you to his wife April. All good marriages are a team effort, and I know that Mark draws strength from your love and support. So thank you, April.

Your author and Dan Moyers

Your author and Dan Moyers

So after listening to that laundry list of accomplishments, you might ask yourself what does it really mean to me.

For me, Mark’s efforts and advocacy and leadership helped us push over the goal line when we were trying to raise the last $400,000 on our $3.5 million new building.

We all know that DSL’s fundraising efforts were started with an amazing $1.5 million grant from Kosair Charities. We can ask for no better friend than Kosair. So thank you to Randy Coe and Jerry Ward and all of our friends at Kosair.

But after 12-18 months of hard fundraising, we were beginning to feel like we had asked everybody we knew to ask. We had hit up every family member, friend, business associate and vague contact that every board member and DSL supporter could think of, and we were still $400,000 short.

Mark came up with the idea to make a big ask of the Louisville Metro Council.

The idea of asking the Louisville Metro Council was not new. DSL has excellent connections at many levels within the Louisville Metro Council, and we had already asked them. We thought we might get $25,000 or so from them.

But Mark also came up with a strategy to build support within Metro Council for a large donation to the capital campaign. Mark approached his friend, Brent Ackerson. Mark and Brent then started to lobby other members of the Metro Counsel.

Long story short, Mark and Brent found a way to raise the last $400,000.

And we were able to start building our beautiful new building on Hurstbourne Parkway.

From my perspective, it was a miracle.

Just another one of the many miracles that have blessed Down Syndrome of Louisville, and blessed our families and our community.

So, thank you Mark Leach for helping us build this blessing that we call Down Syndrome of Louisville.

I share this knowing how vain this seems listing my own accomplishments for DSL. But, here’s why I share it on this blog about Down syndrome and prenatal testing.

When a parent receives a test result that their child has Down syndrome, it can feel like one of the loneliest times in their entire lives. They don’t know what “Down syndrome” means; what their life will look like; how they will tell anyone; and, sadly, many feel guilt and blame (though for no reason, as Down syndrome occurs naturally with no known specific cause). I know these feelings. I felt all of them.

And, then, on the Thursday after our daughter was born on Monday, on our front porch was Diana Merzweiler, DSL’s executive director, and Julie Wright, a parent volunteer whose daughter was just entering elementary school. We had received hardly any information from the hospital about Down syndrome. My wife and I didn’t know what it meant for our daughter, for us, and for our family. Diana and Julie were the first to show us and tell us what our life could be like. I often use the metaphor that they threw the rope down the hole I was in and allowed me to climb out of the darkness of ignorance and fear, and into the light of information and hope.

It is for that single visit that I went on to feel compelled to do those things that my friend Dan listed in giving me the award. In accepting it, I explained I was simply trying to pay back that debt to Diana, Julie, and DSL for being there when we needed them most.

And, that is what I hope you understand.

If you are a parent receiving the news that your child has Down syndrome, you need to know that you are not alone. There are people throughout this nation and world who are getting up every day and working to make it a better life for your child.

When you’re ready, I hope you will reach out to your local support group, or a fellow parent who is raising a child with Down syndrome that you may know. Talk to them. Find out what this life can be like.

And, I hope that you, too, have that transformative experience that I had in my living room on that Thursday, now almost ten years ago. That you step out from the darkness and fear, and get the information and find hope.

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