I am Running for a Reason! Together we can support the Dup15q Alliance in their mission to provide family support, promote awareness, research and targeted treatments for those affected by Dup15q Syndrome.

I've decided to use my training for the 2019 NYC Marathon as a platform to raise awareness and funds for the Dup15Q Alliance. This non-profit organization has been a wonderful support system for my family for the last 4 years after my son, Andrew (5) was diagnosed with a rare genetic disorder called Dup15Q Syndrome.

Just a small donation will go a long way to helping me meet my goal for DUP15Q ALLIANCE

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Yesterday started week 4 of marathon training. Week 3 saw a total of 56 miles on 6 days training, including a 14 mile run with some good climbs in the beautiful Watchung Reservation and a separate hill workout in the back half of the week.

One of the very exciting bits of news that we learned at last month’s Dup15Q Family Conference is that Ovid Therapeutics and Takeda have partnered to start a clinical trial targeted for Dup15Q patients suffering from epilepsy. While (thankfully) we haven’t had to deal with seizures, this news provides hope to the families that do. This trial is in large part the result of the Dup15Q Alliance’s efforts and and is just one example of how funds raised for the Alliance are put to use. Please consider supporting the Alliance as part of my I’m Running for a Reason initiative.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I’ve completed two weeks of TCS Marathon training. It’s time for a quick overview of what Dup15q syndrome is. It’s a rare chromosome disorder explained by these graphics. The disorder often results in low muscle tone, developmental delays, autism, seizures, motor and language impairments, intellectual disability, and behavioral differences.

Week 2 of training consisted of a total of 54 miles, same as last week. The highlight of this past week was Wednesday, when I did my first double run. I ran an easy 4 miles in the morning, and then raced the Downtown Westfield NJ Pizza Run 5k in the evening. I ran a 18:18 (5:53 pace), good enough to win my age group. It’s this event that got me running a few years ago, so it’s a race I always look forward to.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

1st week of training complete! I ran 54 miles in week 1, along unfamiliar routes in Texas. A long run of 16 miles to start the week in Dallas followed by 5 runs in various areas around Houston, including a good workout on the track in Memorial Park. It's no secret that I love running and especially love running as a way to explore cities. It was great seeing a lot more of Dallas and Houston that I otherwise wouldn't have seen. The weather was better than I expected. It helped that I each of my runs started before the sun came up.

We were in Texas for the 2021 Dup15Q Alliance Family Conference. The Alliance organizes this conference every two years to bring Dup15 families together to learn about the latest research and therapies for Dup15Q and it's impacts. This was the third conference we've attended since our son Andrew was diagnosed. These conferences have been very impactful on our family as we've been able to meet many great people. I personally come back in awe of and inspired by the people I meet and hear from at the conferences. The Alliance is made up of some of the most impressive people I've met.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~