The Insane Inflatable 5K

This weekend Kayla and I joined Lucas and Joe in participating in a 5K run ... ok it was mostly a walk! We (Kayla and I) are not runners, haha!

This was my kind of 5K though since running wasn't the main part of it; having fun was. The vast majority of people seemed to be walking this 5K. Along the route were several large inflatables and that is where the fun came in: The Insane Inflatable 5K

One of Lucas' teachers was there and caught the start of the 5K - no one realized Kayla was going to get up the inflatable as fast as she did - she was in beast mode!

Even when we were walking Kayla lagged behind as her pace is not as fast; Lucas was encouraging her to walk faster with little spurts of runs.

We had fun and I'm sure we'll be doing this again next year!

Speaking of running ... Lucas ran in his third Cooper River Bridge Run 10K earlier this month. His goal was to beat his time from last year and finish under 48 minutes and he did it! He finished in 47:05! He also represented LuMind IDSC raising money for Down syndrome research. Donations are still accepted!

Lucas' Second 10K

Lucas is running in the Cooper River Bridge 10K for the second time. He wants to beat his time from last year and finish in under 50 minutes.

He also wants to continue raising money for LuMind RDS and support Down syndrome research.

Last year he raised almost $700 so this year his goal is to hit $800.

All donations will be matched 3:1 (!!!) through March 21 - World Down Syndrome Day. A $25 donation will turn in to $100 donation.

Will you please consider supporting Lucas with a donation? He will be so appreciative!

Thank you!


Cooper River Bridge Run 10K on Crowdrise

Double Digit Birthday

Ten. Lucas is ten. How is it even possible that a decade has passed since I gave birth to this sweet boy of mine?

But it's true. I blinked and he's ten years old today.

Our annual birthday pancake tradition at IHOP

He still enjoys all the same things he has for the past several years: reading, Harry Potter, Minecraft, soccer, and chess.

(First place in a tournament a couple of weeks ago!) 

He's still my little boy with a heart of gold. He's still caring, empathetic, self-less, friendly, social, and sometimes still wise beyond his years. We still contribute to the "donation jar" that he started a couple years ago. Regularly donating what's been collected and starting over.

A couple months ago he ran in a 5K to begin his training for the Cooper River Bridge again. He ran this race last year (finished 3rd in his age group) and has a goal to beat his time and finish in under 50 min.

He's also, again, running for a purpose. He's raising money for LuMind RDS Foundation, as he did last year. If you'd like to make a donation and help him reach his goal I know he will be so thankful.

I can't wait to see where he'll go and what he'll accomplish in the future; but I'm also in no hurry for him to grow up. Time, slow down a little.

Happy 10th birthday Lucas!
"I love you more!"

He "Got Over It"

Earlier this year Lucas told Joe that he wanted to run in the Cooper River Bridge Run - a 10K race that Joe ran a few years ago. So Joe registered them both and they trained when they were able.

A tag line of this run is "Get Over It" - ie getting over this bridge.

The only other race Lucas has participated in was a couple years ago when a friend organized a 3.21 Run/Walk for World Down Syndrome Day. I was surprised that day when he ran the whole thing as we anticipated he would run for a small part of it and then walk the rest of the way - but he hung with the race organizer and ran the whole distance.

I wasn't sure how his first 10K was going to go, but he was determined to do this race.

I needn't have worried.

Lucas conquered his first 10K. He finished 3rd in his age group of 82. Out of 32,623 participants, he finished 2980 overall. His time was 52:34 with a pace of 8:27/a mile.

He also finished 1:05 ahead of his dad. Bragging rights, right there!

Right after the race Lucas said he wanted to do it again next year.

He's following in Joe's running footsteps, not just by running races, but also running and fundraising as a representative for LuMind Down Syndrome Research. He raised almost $700 for LuMind. So proud of this kid!

Finding his and Joe's names at the expo

Ready to run

Finished!

Red and tired faces

The 3rd place finish medal he received

His exciting day didn't end with the race. That afternoon he scored a goal in his soccer game; which his team won and finished their season undefeated.

His day ended at the playground ... where he found $5.

A great day indeed!

Not Special Needs and His First 10K

Today is World Down Syndrome Day - March 21st because people with Down syndrome have 3 copies of their 21st chromosome.

The past few years the CoorDown organization from Italy has produced some great PSAs for WDSD, and the one for this year doesn't disappoint.

It's about describing people with disabilities as having "special needs" - and although I have, and do, use that description, I haven't always felt comfortable with it. There's a nagging feeling in the back of my head when I say "special needs" ... which I blogged about 5 years ago in "That Word Special."

I was glad to see CoorDown put a video out that mirrors my thoughts: Not Special Needs, Human Needs. Kayla doesn't have special needs - she has human needs.



And another note on World Down Syndrome Day - as in years past, all donations made today to LuMind RDS will be matched 3:1. How great is that? A $25 donation will be matched with $75 turning that donation into $100.

In more news - Lucas is following in Joe's running shoes. He's running his first 10K in the Cooper River Bridge Run on April 1st. And just like Joe, Lucas is representing LuMind and raising money for Down syndrome research. If you're able to support him in reaching his goal he would really appreciate it! Any donation made today through his Crowdrise page will also be matched 3:1 as the donation goes to LuMind. Thanks for any support!

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
Grab This Button

 

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
 

Research Down Syndrome Runners in the Making

Last Friday, for World Down Syndrome Day, we participated in a virtual run/walk event sponsored by Research Down Syndrome Runners. The virtual run/walk happened anywhere and you could make your own variation of 3-2-1. The mom who organized our event set it up as a 3.21 mile run/walk.

Lucas heard me talking about the event we were doing and that you could run for 3 min and 21 sec, you could walk around your block 3.21 times, you could run 3.21 miles etc. He said he wanted to run for 3 min and 21 sec.

So Joe and Lucas started out running with the other runners. Joe set his stop watch. When 3 minutes and 21 seconds were up he told Lucas they could stop running and finish it out by walking. He said Lucas just looked up at him with a big smile on his face ... and kept running. And kept running. Joe was wearing jeans, so he stopped running. Lucas hung in there with the race organizer and ran the whole 3.21 miles in about 30 minutes.

We had no idea that he was going to do that, much less that he could do it. He basically ran a 5K out of the blue. So proud of my little guy!

Later he asked "Is that run only on Down Syndrome Day?"

I told him that particular one was, but there are a lot of runs that happen all the time. He said he wanted to do another run.

I told him he was going to be like his dad running races for Research Down Syndrome. I pointed out the logo on all of our shirts and how people run for RDS to raise money; then the money goes to scientists and researchers who are studying Down syndrome and how to help people with Down syndrome. I asked him if he wanted to run like that - to run for RDS and raise money for them.

He was excited and said "Yes!" I turned to Kayla and said, "Kayla isn't that nice of Lucas? He wants to run for Down syndrome and raise money that will help people with Down syndrome."

Lucas chimed in, "Kayla I'm going to help you. I'm going to run for you!"

I love his heart. And I know there is an organization called I Run 4, where you can sign up and be matched to run for someone - but you can't request who you want to run for and you can't chose your own family member.

Maybe when he's older Lucas can get involved in something like that and run for someone else, but I love that right now ... he wants to run for his sister.

Joe is planning on running the Air Force marathon for the 3rd time and he also won the lottery for a bib number for the Marine Corps Marathon ... maybe one day Lucas will be running marathons with Joe. 

In the meantime I'm signing him up for his first event: The Cooper River Bridge Kids Run.

But it won't be just Lucas; I'm signing Kayla up too. She signed up for the Running Club at school because 2 of her friends go and she wanted to go too. She just went to her first meeting and seemed to enjoy it. They practice running a mile and improving on their time each week. Kayla is active, but she's not quite a runner (she's just like me). She runs, but in spurts. And her running gait isn't very fluid. But this kids run is a mile, not a 5K. I think she can handle running/walking a mile; and I will be there to help encourage her.

Lucas was excited at the prospect of raising money, but he also wanted to know, "But do I have to send them ALL my money?" When I said yes, he sighed, "Ah man." Then I told him it's not actually his money, but money people donate to RDS in his name - for running a race. They support him with a donation and he supports RDS by running. So for their first event they'll both be running for RDS, but Kayla will also be running for herself. Self-advocacy has to start somewhere!


I've set them up with a Crowdrise page if anyone would like to donate a little something to their efforts. Thank you!

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!