We did it!!! With your help the Molly Bear Foundation was one of the winners of a $20,000 grant from Chase Community Giving! We finished in 184th place with 1,538 votes, which is amazing for a small organization that was started only a year ago. We could not have accomplished this on our own, so thank you to everyone who voted, shared, begged, and pleaded to get us votes. It was a close race, with only 57 votes separating us from 200th place.

Another Trisomy 18 organization, the Chromosome 18 Registry and Research Society, won a $20,000 grant; some of the organizations with whom we partnered throughout the competition like Gloria’s Angels, The Lindsay Foundation, Blessed Sarnelli; and many other wonderful organizations. Unfortunately Noah’s Never Ending Rainbow did not stay in the top 200. However, its founder Dana Tehako-Esser, was happy the Chase Community Giving Challenge gave her the opportunity to spread awareness of Trisomy related conditions and that two Trisomy organizations will be awarded grants that will help the Trisomy 18 community.

Without your votes and the votes of your family and friends, winning this grant would have been just an idea. Because of you, it is a reality. This is an exciting time for the Molly Bear Foundation. We look forward to using this grant to help families and sharing our good work with all of you.

Simply click on the banner above and cast a vote for the Molly Bear Foundation. If you wouldn’t mind, it would be very helpful if you could then share with your friends and ask them to cast a vote as well. Every vote counts and we have almost three weeks left of voting. Currently MBF is 126 but we have to stay in the top 200 to qualify for the money. It’s a long road; we need your help.

As is the case with anything we do here at the Molly Bear Foundation:

Without you, this is just an idea!

Content taken for the May issue of Exceptional Parent Magazine, Page 65
Written by Nancy Henderson

Not long after Sean Brown and his wife Erin chose a name for their unborn daughter, a friend gave them a stuffed animal, which they fondly called “Molly Bear’s Molly bear.” The nickname stuck.

“We didn’t know about the ‘unsinkable Molly Brown’ until after she was born and people kept saying, ‘Molly Brown? Like the unsinkable Molly Brown?’” Brown recalls. “Molly Bear just seemed fitting because she was such a tough kid.”

Molly was born with Trisomy 18, sometimes called Edward’s Syndrome. It is the second most common chromosomal disorder next to Down Syndrome; three appearances of the 18th chromosome, rather than the usual two, cause varying degrees of physical, mental and developmental disabilities. Many children with T18 don’t live to see their first birthday. Molly Bear did.

Unlike some families, the Browns, who lived in Hightstown, N.J., were relatively financially secure, and their friends and family members were extremely supportive. Molly, who ate her meals through a feeding tube surgically attached to her stomach, required a special type of formula that could only be purchased frmo a medical supply company. “When I switched jobs and my insurance was changed, it stopped covering this formula as well as the supplemental oxygen we had in the house, and the pulse oximeter,” says Brown. “We didn’t get a bill for several months and when we did, it was over $5,000. But she has to have the formula, so we had to figure out a way to pay for it monthly.”

After Molly passed away in 2008, at the age of 19 months, the Browns vowed to help other families raising children with T18. The Trisomy 18 Foundation and other support groups had been helpful, says Brown, “But we were not aware of any organizations focused only on directly assisting families financially.”

Launched in early 2009, the Molly Bear Foundation aims to provide a better quality of life for families living with Trisomy 18 while helping with uncovered medical expenses, in-home care and therapy, physician-prescribed formula not covered by insurance, and supplemental oxygen for home use. (Parents submit invoices and the Foundation pays the vendors on their behalf.) In addition, in January the board of directors voted to award the first Molly Bear Foundation grant to a family in Waterbury, Conn.

Much of the funding is raised by Team Molly Bear, a group of more than 30 local athletes who run, bike, swim, walk and participate in other high-energy, publicized events. For Brown, who trained for his first triathlon in the summer of 2006, after the couple learned their daughter would be born with T18, competitive racing seemed like a natural way to generate funds. “Training became therapeutic,: Brown says. “I looked forward to long runs or rides so I could think. I had no idea what was going to happen when Molly was born.”

For the next two years, he and several friends competed to raise money for the Trisomy 18 Foundation; when Molly passed away, they funneled their efforts into the new Molly Bear Foundation. This month, the team will participate in the Go-Tri Sport Sprint Triathlon in Hilton Head, S.C. By the end of September, they will have competed in a half-dozen annual marathons, triathlons and distance runs in New Jersey, San Diego, and Philadelphia. The Foundation’s first golf outing takes place in August at the Peddie golf Course in Hightstown.

“We hope to continue to grow at a steady pace and consistently raise more money and generate more revenue to, in turn, award more grants to families,” says Brown, whose goal is to raise twice as much money this year as last, expand Team Molly Bear to include 40 athletes, and add more competitive fundraising venues.

“Since we rely on donations from individuals, we essentially have to reacquire assets every year,” Brown points out. “We are aware of a number of families who would benefit from the Foundation’s assistance, and we are currently accepting grant applications. We hope to have $20,000 to award [in grants] this year.”

“There are things a child with T18 will need, and the family should not have to be burdened with figuring out how to pay for something that is necessary for their child’s vitality,” says Brown. “They should focus on spending time with their child and enjoying it.” For more information about the Molly Bear Foundation, see www.mollybear.org.

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Nancy Henderson is an award-winning writer whose articles have appeared in Smithsonian, The New York Times, Parade, US Airways Magazine and many other publications. She is the author of Able! How One Company’s Extraordinary Workforce Changed the Way We Look at Disability Today (BenBella Books). Nancy often writes about disability issues and people who are making a difference through their work.

Less than two weeks until race day.  That can only mean one thing: if you still need my training updates you’re in big trouble!  Basically over the next two weeks you want to do some solid short runs, with a nice long one in the middle.  So this week run a couple of serious five mile sessions; this weekend put in 10-13 at an easy pace; and then next week ratchet it back and go into the race well-rested.

For those of you that aren’t doing the Unite, but have plans for something in the next few weeks or months…fear not: I will keep posting training plans for you all to live and breathe by.

In exchange, though, I need you to do something for me: get your FirstGiving fundraising page set up and start advertising your plans.  We have had a few new folks join the team in the last couple weeks and they’re now #2 and #3 on the fundraising challenge.  That’s right, they’re both ahead of me!  But I am coming after them.

If you’re looking ahead: Broad Street Run on May 2, and the Hilton Head Triathlon on May 22.  Register and join Team Molly Bear today!  We’d love to have you.  Details can all be found on the MBF web site.

That’s correct, folks, I totally skipped a week of posting the training plan.  It’s basically indicative of my own training.  Let’s just say, as I prepare for this morning’s 8 mile run, I am not feeling great about my progress.  I was really sick a couple weeks ago and it caused me to miss an entire week of workouts, drop ten pounds from not eating a single thing for five days, and fall way behind in my training.  My apologies, but inadvertently that also impacted some of you when I failed to post this past week’s training log.

On a happy note, Chris Parkison opened the 2010 season in DC yesterday at the National Half Marathon.  As we have come to expect with the Dilla, he rocked it.  If you ask him he will tell you it was awful, but I say he is exaggerating.  He told me he wanted to do it in less than two hours, and he did.  So kudos to him.  Dilla actually goes at it one more time in Miami for the Nautica South Beach Triathlon the week before the Unite Half Marathon.  He’ll be two races into the season when most of us start.

So without firther ado I give you the week 9 program: March 21 run 8 miles; Monday: Strength (lift, stretch, yoga); Tuesday: 5 mile run; Wednesday: 3 mile run or other (swimming, biking, basketball, aerobics); Thursday: 5 mile run and strength; Friday: Rest; Saturday: Other (see Wednesday); Sunday, March 28: TMB 10k run at Mercer County Park.

The Brown crew spent this past week visiting family in Houston, so I got to run in Memorial Park.  There is a nice little 3 mile loop with a wide packed-gravel path.  It was quite busy while I was running on it, even in the middle of the day.  Allegedly it is really busy in the evening.  The only reason I mention any of this is I came to learn that an estimated 100,000 people per day run on the Memorial Park loop.  We need a park like that around here!

Some housekeeping issues: if you are participating in the Unite 1/2 Marathon please be sure you have registered.  They are expecting to fill up in the next few days.  Also, please let us know when you have done so.  I want to try to get a relatively accurate idea of our numbers for the event.  Finally, if you have not already, please set up a FirstGiving page so you can effectively raise funds.  Remember, training is only half the battle; we need to raise money so the Foundation can support families who should not be burdened with financial challenges but rather focused on loving and caring for their child.

By the time most of you read this it will already be too late, but hopefully some of you are planning to meet me at Mercer County Park this morning.  I’ll be over there in less than an hour.  If you can’t make it, no big deal, but you still need the next week’s workouts:

Sunday, March 7: Team Molly Bear 5k run at MCP or 3.1 miles on your own! Monday: Strength (lift, stretch, yoga); Tuesday: 4.5 mile run; Wednesday: 3 mile run or other (swimming, biking, basketball, aerobics); Thursday: 4.5 mile run and strength; Friday: Rest; Saturday: Other (see Wednesday); Sunday: Run 7 miles.

My apologies.  I was off skiing and having a good time with my buddies and, thus, missed my post last Saturday for Week 5. Hopefully you all were able to stay on track without me hounding you. I bet you were!

So I am a day early, but I figured since I have some time (snow day; got sent home from work early) I would go ahead and post next week’s training schedule.  Lucky you, next week is a recovery week!

Without further ado here is the next week plus of training, culminating with a 5k run on Sunday, March 7 at Mercer County Park.  I will be at the marina at 9 am.  Hopefully some of you will join me.

Saturday, Feb 27: Other (swim, bike, basketball, aerobics); Sunday: run 6 miles; Monday: Strength (lift, stretch, yoga); Tuesday: 4 mile run; Wednesday: 2 mile run or other (see Saturday); Thursday: 4 mile run and strength; Friday: Rest; Saturday: Rest; Sunday, March 7: Team Molly Bear 5k run at MCP.

Somehow there is now more snow on the ground and the Unite is a week closer.  Hopefully you all have access to a treadmill…that or you are really brave to go out in these conditions.  I will not run outside for another month.  Which reminds me: put March 7 on your calendar; we’ll meet early in the morning to run a 5k together if anyone is interested.  Or, better still, maybe there is a local 5k we can enter that weekend?

The team for the Unite Half Marathon is up to 19 people.

FirstGiving page has five fundraising pages up.

Kelly Wessels has raised $200 toward her $500 for the Citispa Power Run in Singapore.  TMB is officially global!

If anyone has any questions about anything regarding the Unite, please let me know.  I am planning to order long sleeve MBF tees for race day so please let me know what size you would like.  If anyone not participating in the Unite race wants a long sleeve tee let me know that as well.

Slow week this week so not much else to report.  Without further ado, I give you this week’s training plan.  If you don’t make it the full 5 miles tomorrow do not get frustrated…you get another shot on Feb 21.

Sunday: run 5 miles; Monday: Strength (lift, stretch, yoga); Tuesday: run 3.5 miles; Wednesday: run 2 miles or other (swim, bike, basketball, aerobics); Thursday: 3.5 mile run and strength (see Monday); Friday: Rest; Saturday: Other (see Weds).  Sunday, Feb 21 we’ll run 5 miles again.

Happy Valentine’s Day.

Molly Bear Foundation Awards First Grant to the Tosado Family
Help to Underwrite Medical Expenses for Connecticut Family Caring for Child with Trisomy 18

About the Molly Bear Foundation

MBF is a 501(c)(3) organization that provides supplemental financial assistance to families raising children with Trisomy 18. While each case is different, and many children will not survive the potentially life-threatening challenges common in the early stages of development, education and research are helping these special children live longer lives and bring happiness to their families. MBF was created to help these families enjoy every minute with their children.
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It’s hard to imagine a nice, spring morning as we all – assuming you’re on the east coast, anywhere north of NC – watch the snow fall in inches.  But, April 18 is only 10 weeks from tomorrow.  There is nothing to base this on other than pure positive thinking, but it is going to be 60 degrees and sunny, with no wind.

How did everyone do on the training program last week?  Any suggestions to make it better?  Are you even following it?  Do you have your own?

An friend and former colleague sent an email to a hundred people yesterday looking for a couple new runners.  Hopefully we can increase our numbers for April 18.  Would be great to have a strong showing since there will be so many people at the venue.  Keep looking out for folks who may want to join and direct them to the TMB web page.

More details on race day events as the date comes closer.  For now, I leave you with the training program for the next seven days:

Sunday: run 4 miles; Monday: Strength (lift, stretch, yoga); Tuesday: run 3.5 miles; Wednesday: run 2 miles or other (swim, bike, basketball, aerobics); Thursday: 3.5 mile run and strength (see Monday); Friday: Rest; Saturday: Other (see Weds).  Sunday, Feb 14 we’ll run 5 miles.

And a fundraising task: start thinking about your strategy.  Are you going to send letters?  Emails?  Set up a FirstGiving site?  Use Facebook Causes? Do you need some examples?  What’s you goal going to be?

Hopefully this week everyone will notice they are starting to feel better during the short runs.  The five mile run next weekend will be a great test of progress.  Let’s hope it’s nice enough to run outside!