R is for Running, Racing, and Research

Joe is the runner in this family. He ran his first marathon in 2012 and this Sunday he will run in his second Marine Corps Marathon, and fifth overall (plus a half thrown in there).

Last year we went to DC to cheer him on and it was a fun time for the kids cheering for everyone and then seeing Joe running towards us.

Since he started running he's been representing Research Down Syndrome Runners raising money for Down syndrome cognition research. RDS recently merged with LuMind which became the LuMind RDS Foundation. They both had the same mission and end goal of raising money for cognition research and they used the same scientific advisory board; now resources can be pooled for one streamlined organization with the runner's program staying active.

If you'd like to support Joe's race this Sunday, and, ultimately support Kayla and all individuals with Down syndrome, please consider a donation to his fundraising page for the Marine Corps Marathon. Every donation is appreciated.

Down syndrome is one of the most common genetic conditions, yet the least funded. LuMind is doing great things in the field of Down syndrome cognition research with providing grants (10.4 million since 2004) for research and we'd like to support this effort in any way that we can.

We had an opportunity to support LuMind RDS in a fun way this past summer - we participated in the 2nd annual Race for Research. This was a 3 day road rally/scavenger hunt through SC/NC with a NASCAR-related theme. One of the highlights of  the trip this year was getting a ride in the pace truck for a couple of laps at Darlington Raceway.

Met NASCAR legend and Hall of Fame-r Cale Yarborough

Running across finish line at Charlotte Motor Speedway

Met current NASCAR driver Austin Dillon

Another legend and International Motorsports HOF-er Humpy Wheeler (also the voice of Tex in the movie CARS) signed Lucas' forehead, and the dollar he gave him for knowing the general area of where Maine is!

Fundraising Websites - Crowdrise
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Giving Tuesday

The Tuesday after Cyber Monday, which follows Small Business Saturday, which follows Black Friday, which follows Turkey Day ... has come to be known as Giving Tuesday.

Giving Tuesday is a day dedicated to giving back. Giving back to others, giving back to your community, and giving back to charities and organizations that are doing good to helping others. Giving back can be donations or volunteering your time.

Here are a few organizations that we believe strongly in for their work and support in Down syndrome cognition research, LuMind Foundation, Research Down Syndrome, and the Jerome Lejeune Foundation USA.

A generous donor as pledged to match 1:1 for gifts of $1000 to LuMind, but of course any amount is appreciated. Donations can be made here. LuMind has put together this list of 10 reasons to support LuMind and cognition research with a donation.

The past few years Joe has combined his participation in marathons with raising money for RDS Runners. Donations to Research Down Syndrome can be made here.

Joe's recent completion of the Marine Corps Marathon:

Dr Jerome Lejeune is the geneticist who discovered that the medical reason for Down syndrome is 3 copies of the 21st chromosome. The original Foundation, based in Paris, was founded to carry on Dr Lejeune's work. The main focus is on research, care, and advocacy for people with Down syndrome, but they also fund research into other genetic intellectual disabilities such as Fragile X, Cri du Chat, and Rhett's syndrome.

Since it's founding the Jerome Lejeune Foundation has supported researchers in the U.S. and after being engaged with the research community here, the Board voted to establish the Jerome Lejeune Foundation USA with the same mission as the one in Paris: "...serves those with Down syndrome and other genetic intellectual disabilities in a spirit of profound respect for their inherent human dignity, and that of all human persons." Donations can be made here.

What are some organizations that you are supporting during #GivingTuesday?

 

Marine Corps Marathon

Joe ran in the Marine Corps Marathon today. It was his 3rd race this year after running in the Air Force Marathon and the Army 10 Miler.

This was his 4th marathon (ran the Air Force Marathon 3 times), but the first time we've been there to cheer him on and meet up with him after the race. For one, driving to OH where the Air Force Marathon is held is a few hours longer than driving to DC for the MCM. For two, my mom lives in MD so bonus of going to this marathon was visiting and staying with grandparents.

We had to take the kids out of school on Fri and Mon for travel days, but I'm so glad we did. It was great to be able to see Joe running and give him encouragement and then to greet him after the race.

We saw him at about mile 22 and then we dodged runners as we ran across the street and met him on the other side as that part of the route looped around. I didn't realize that I stopped the video so quickly each time we saw him, but here are a quick few seconds:



The kids also had a fun time cheering on the sidelines for the runners as we waited to see Joe. They liked holding their hands out for high-fives and got a big kick out of each time a runner slapped their hand.

Congrats to all the finishers in the MCM! It is so inspiring to watch all those people running 26.2 miles. It makes me wish I could be as dedicated, brave, and persistent at running like they do. But I hate running. I do. I simply have no desire to run, and run, and run for 26.2 miles. But I am in awe of all those who do run!

 

Retirement Tour Marathons

It's official.

My husband, Joe, is retiring from the Air Force after 22 years. How I feel about that is a post for another day.

This post is about his 'retirement tour' - the races he'll be running in by the end of this year.

He registered to run in his third Air Force Marathon and I half-jokingly said to him that he should do a 'retirement tour' and make it military-related since he's retiring from the military.

So he took up the challenge.

He'll also be running in the Marine Corps Marathon and the Army Ten Miler.

For each race he will also be running for Research Down Syndrome - as he's done in the past. RDS Mission is to "...fund and support scientific research directed towards the development of safe and effective drug therapies that will improve memory, learning, and communication in persons with Down syndrome and address the increased likelihood for Alzheimer's disease."

Any donations to Joe's fundraising page is much appreciated.

Fundraising Websites - Crowdrise
 

Running The Air Force Marathon

Research Down Syndrome funds and supports scientific research at leading institutions that are studying the basis of intellectual impairments in Down syndrome. One of the ways they are doing this is with the RDS Runners program. They are charity sponsors with various marathons around the country.

Last year my husband, Joe, completed his first marathon -the Air Force Marathon - as a runner for RDS. He also completed the Disney Half Marathon in Jan. Joe will once again be running in the Air Force Marathon on Sep 21st and raising money for Research Down Syndrome.

Down syndrome is one of the most common genetic conditions, but one of the least funded in the NIH. Research in Down syndrome isn't just DS-specific but extends to research connected with Alzheimer's and leukemia.

There are several current research studies happening now that are focusing on the why and how having the extra chromosome causes delays for people with Down syndrome; including how to 'turn off' the extra expression that happens in specific genes.

Research like this could possibly lead to medical therapies for intellectual disabilities to help improve memory and cognition which will allow people with Down syndrome to be more independent.


If you are able to donate to Joe's Crowdrise page for the marathon it is much appreciated!

Run Disney

A few months ago Joe ran in the Air Force marathon - his first and not his last. He's signed up to run another marathon next month. This time we'll be joining him (for the location; not to actually run with him) for the runDisney Marathon at Walt Disney World. How could the family not go along?

The weekend of the marathon worked out great for us because Kayla doesn't have school that Monday; perfect for the travel day back home.

Guess we'll have to make some time to explore the new Fantasyland while we're there!

Once again Joe is running for/with the Research Down Syndrome (RDS) Runners. RDS supports scientific studies directed towards understanding the sources of cognitive difficulties in people with Down syndrome.


 

Running for Down Syndrome Research

I'm not a runner, but my husband is becoming one. He ran the Cooper River Bridge Run earlier this year and is already signed up for next year.

He's currently preparing for his first marathon. He'll be participating, (appropriately enough since he is active duty Air Force thankyouverymuch!) in the Air Force Marathon.

Running and Down syndrome research have come together in the form of the Research Down Syndrome Organization. RDS is a non-profit organization supporting Down syndrome cognition research.

One of the ways they raise money is through running - Research Down Syndrome Runners/Race for the Extraordinary.

There are RDS Runners teams participating in races all across the country.

One of these races is the above-mentioned Air Force marathon that Joe is already signed up for. It was easy to connect the two and have Joe join the RDS Runners for his first marathon.... what could be better than running to raise awareness, support, and funding for Down syndrome cognition research?


There is also a team running in the Disney Marathon in January - he's planning on signing up for that too -quick family vacation to Orlando!

Here is Joe's Crowdrise Fundraiser page for RDS Team in the Air Force Marathon.

Good luck Joe!