WDW 2020 Here Comes Run4Will

We’re getting the band back together once again and have committed to WDW 2020. Lot’s of 10Ks will be finished.

Team Run4Will’s 2020 fundraising page can be found here.

Additionally Chris is flying the colors with the Race to End Duchenne at this year’s Boston Run To Remember Half Marathon.

We appreciate your support in our quest to End Ducheene and support better outcomes and quality of life for all affected.

Support Team Run4Will

January 2019 will be our NINTH year running for Parent Project Muscular Dystrophy (PPMD) and our seventh year running in their largest yearly fundraiser, the Walt Disney Marathon Weekend!

We need your support. With your help we can affect change and progress with PPMD. PPMD is the largest nonprofit organization in the United States focused entirely on Duchenne and has improved the treatment, quality of life, and long-term outlook for all individuals affected by Duchenne through research, advocacy, education, and compassion.

Click any of the links below to support our team in achieving our combined goal of $6500. Your donation dollars help fund research that is making great strides and hold real hope for our family!

Team: Donation Link

Anne Hancock: Donation Link
Chris Hancock: Donation Link
Bridget Andersen: Donation Link
Kris Berryman and JP: Donation Link
Eileen Habesland: Donation Link
Maggie Novello: Donation Link
Nicholas Novello: Donation Link

Run4Will 2019

January 2019 will be our NINTH year running for Parent Project Muscular Dystrophy (PPMD) and our seventh year running in their largest yearly fundraiser, the Walt Disney Marathon Weekend! In that time our efforts have grown from supporting Chris and his crazy running to a team. Team Run4Will is made up of lifelong friends, new friends, friends of friends, and many families.  To date our team has included over a dozen runners.  This year’s team features a trio of sisters, some old faces, some new faces, and lots and lots of heart.  We aren’t all runners, but we sign up anyway and flog ourselves and every

year at the finish line celebrate surviving and vow to come back again next year.  Why? Why do this?

Well, in the years since we started this crazy adventure, we’ve seen advances in research and quality of life for those with Duchenne continue to improve yet there is still no cure.

2018 RFW team photo copy

So, we run. We run for William. We run for all affected by Duchenne. Sadly, we see first-hand how swiftly Duchenne progresses so our efforts to improve qua

lity of life, slow and eventually end it must be equally aggressive.  Although William continues to thrive and find joy in life, time is ticking. In April 2018 we had our first reality check in a long, long time. William’s Cardio MRI showed a decrease in left ventricle function. We’ve add another medication in the hope of keeping his heart healthy, but the decline can’t be stopped, only slowed if we are lucky.

This is where we need your support. With your help we can affect change and progress with PPMD. PPMD is the largest nonprofit organization in the United States focused entirely on Duchenne and has improved the treatment, quality of life, and long-term outlook for all individuals affected by Duchenne through research, advocacy, education, and compassion.

Your donation dollars help fund research that is making great strides and hold real hope for our family!  Want to see results?  Read on….

  • In January 6, 2017 PPMD announces a $2.2 million dollar grant in support of Dr. Jerry Mendell, Dr. Louise Rodino-Klapac (co-PI), and Nationwide Children’s Hospital to explore gene therapy in Duchenne.
  • On January 5, 2018 at the PPMD Marathon Weekend Pasta Party, Pat Furlong announces that Dr. Jerry Mendell contacted her and said they successfully dosed the first Duchenne patient in the Microdystrophin Gene Therapy study.
  • On June 19, 2018, at Sarepta’s “R&D Day, Jerry Mendell, M.D. of Nationwide Children’s Hospital presents positive preliminary results from its Phase 1/2a gene therapy clinical trial assessing AAVrh74.MHCK7.micro-Dystrophin in individuals with Duchenne.”

The success and speed of this research is astounding and wouldn’t be possible without your continued generosity and support.  So thank you for giving our family hope.  Thank you!

This year we are running the 2019 Disney 10K with Team Run4Will. We appreciate your generous support.

How you can help

Click “Donate Now” on the right and make a donation or if you prefer, you may also mail a check, made payable to Parent Project Muscular Dystrophy, to:

Parent Project Muscular Dystrophy, 401 Hackensack Avenue, 9th Floor, Hackensack, NJ 07601

(Please note that the check is in honor of Team Run4Will/Disney World in the memo)

All funds raised will benefit Parent Project Muscular Dystrophy (join.parentprojectmd.org) and go directly toward researching a cure. Your support is tax deductible but, more importantly, it’s needed right now.

Please share this page with your friends, family, and network.

Thank You!

Adventures as a PPMD Research Study Participant

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Stress test by the numbers.

I first heard about a research trial being conducted at Nationwide Children’s Hospital in Columbus Ohio for carrier mothers of boys with Duchenne and Becker’s Muscular Dystrophy about a month ago.  It was an innocuous Facebpost by PPMD highlighting just one of the many amazing research projects they are providing grant monies to around the country.

But this research project spoke volumes to me because I am a carrier of DMD/BMD.  For those unfamiliar with genetic lingo, it means that my son, William, has muscular dystrophy because of genetic coding that came from me.

Sit with that for a minute and consider what that means to a mother psychologically– the guilt, the shame, the anger.  In my darkest hours I perseverate on this guilt and take responsibility for something I had no control over.  I stew over comments made by other moms of boys with DMD/BMD who aren’t carriers.  I rage (in my head) at their seeming sense of pride in not being a carrier and shout “WTF! I thought we were in this together!”

But there is another side to being a carrier, a physical side.  I struggle every day with muscle aches and pain and unending fatigue. Oh and I may have some compromised heart health. They just don’t know because no one has studied carrier moms before.  But no big deal, my primary care doctor should just monitor my heart.  When I relayed this message to the 3-4 primary care doctors I’ve burned through since 2008 they didn’t know what to do and getting insurance to pay for Cardio MRI’s or echocardiograms unless you’ve had a heart attack is a laborious process that may not be covered in the end.

In 2014 I was determined to get to the bottom of my fatigue and body pain.  That process involved lots of blood work, a sleep study, more blood work and finally ended with a diagnosis of fibromyalgia.  According to Medline “Fibromyalgia is a disorder that causes muscle pain and fatigue…people with fibromyalgia may also have other symptoms, such as: trouble sleeping; morning stiffness; headaches; tingling or numbness in hands and feet; and problems with thinking and memory”.  It’s a diagnosis of last resort, you can’t test for it, but it certainly covered all of my complaints.  I’ve never been satisfied with this diagnosis though and haven’t had much pain relief with the meds they prescribed for it.

When I found out about the Nationwide research project by Dr. Mendell, I jumped in feet first. I wanted answers and knew this was the only way I was going to get meaningful answers.  I also wanted to contribute to a body of knowledge so maybe future carrier moms would have a better sense of what the carrier status meant for their physical health.  I connected with one of the study coordinators, assembled my medical records, filled out the necessary forms, bought two plane tickets (Chris was coming with me), booked a hotel, and rented a car.  I agreed to be a guinea pig for science and would spend two days giving baseline data to researchers.

I am writing this novella from the airport while we wait for our delayed plane ride home. Two days of tests behind my, the baseline numbers have been collected.  I’ll go back yearly two more times for the same tests.

Here’s what my schedule involved. On day one there was a small blood draw, the infamous 6-minute walk test, strength testing with a medieval looking PT set-up, a hair sample was taken, and a battery of socio-psychological tests were administered.  On day two there was an early morning Cardio MRI with contrast (meaning an IV- yuck!) and a stress test using an EKG monitor, VO2 max head set, and treadmill. But because the day started so early, I was done by 10am!

I have to two take aways from this adventure (two for now).

1st the doctors, health professionals, staff at Nationwide Children’s hospital are doing amazing work. Everyone I met was friendly, professional, and genuinely caring about moms like me and our boys. They are rooting for us all! I am grateful for these professionals and hope that their research provides some answers.

2nd I was constantly thinking about William and all the boys with muscular dystrophy. They are poked and prodded from such early ages and they somehow manage it multiple times a year.  I thought about the boys while I did the 6-minute walk test and how William never got to do the test. The strength testing session with the PT was familiar since I watched William struggle through these sessions since he was 4 – I even had to do the get up off the floor test from a prone position. Finally, as I lay in the MRI tube with an IV in my arm I thought about William and marveled at the fact that he made it through the test once already and it involves a needle and IV! William hates needles.  I am in awe of William and all the boys and young men who go through these test and many more frequently.  They are the real troopers!  For a carrier mom the tests are nothing, but being able to participate in a study that may help others – that’s everything.

For more information on this study see below. To find out what else PPMD is funding thanks to your generous donations, click the link below.

Jerry Mendell, M.D., Nationwide Children’s Hospital
Amount: $452,181
Date: 4/2016 4/2017
Title: Determine incidence and prognosis of clinically significant cardiac, skeletal muscle and cognitive impairment in carriers of DMD and BMD
Abstract: This study is a collaborative project between the Neuromuscular and Cardiology divisions at Nationwide Children’s Hospital. It is a longitudinal study with baseline and 12-month follow up assessments of female carriers of DMD/BMD mutations. The testing in this study aims to determine the frequency and clinical significance of heart and extremity muscle involvement in these patients and will evaluate the emotional burden of being a carrier as well as a care provider for a child with DMD or BMD.

Other research projects:

http://www.parentprojectmd.org/site/PageServer?pagename=Advance_funding

 

Goofy Challenge Part 1 – The Half Marathon

Last week I ran the Goofy Challenge at Walt Disney World in support of Parent Project Muscular Dystrophy and their Run For Our Sons campaign. This was our third year heading south in January to participate in the Marathon Weekend. In 2013, I ran the half marathon and last year I ran the full marathon. Initially we were going to skip going this year but Anne joined in the fun last year doing the 10K with her childhood friends Maggie and Kris they weren’t interested in taking a pass. We didn’t really need much (or any) convincing. Soon after, Anne’s high school friend Carolyn and her husband joined the team. We were six strong and looking to tackle over 100 miles of the Disney Marathon Weekend.

goofy-expoThe marathon isn’t my best racing distance and last year’s Disney Marathon got tough early and I was toast by the end. I would have been wise to acknowledge that running a marathon after walking around Disney parks for almost 4 days wasn’t a great idea. Well, this sort of wisdom is in short supply with runners and I not only signed up for the marathon, I signed up for the half marathon too.

Two days. Two races. One Goofy Challenge.

Along the way we received support of numerous family and friends making this our biggest fundraiser yet! For that we are very grateful. Every dollar will be put to good use advocating and funding research for boys like William. The shirt says “I run to EndDuchenne” and that was our primary reason for going.

Anne, Maggie, Kris, and Carolyn were up first with the 10K on Friday. Somehow (despite delayed flights and forgotten race bibs) they all met before 5am and were off to get lost winding their way around Epcot for more than 6 miles. It was barely 40 degrees and dark at the start so they moved quickly to keep warm, finishing almost 20 minutes faster than last year. I’d like to see that kind of year over year 10K improvement so I could quit my day job.

10K

Leading up to the Goofy I spent more time thinking about how to run it than anything else. Should I run the half fast and hope I can still run a marathon? Do I run the half really slow and try to run the marathon faster? I even went as far as downloading last year’s results into a sortable spreadsheet and quickly discovered the fastest Goofy runners ran an even pace over both days so in short order that was my plan.

Leading up to the races was an extremely busy work and travel week and I didn’t run for 5 days. The night before the half, I was so eager to get started I only slept about 2.5 hours before the alarm rang at 3. Disney races start at 5:30 in the morning! For this reason alone I can’t imagine why so many people sign up for them. In my mind it’s easier to run a half marathon than get up at 3am!

Prior to heading off to my corral, I spent some time at the PPMD tent and chatted with the other Run For Our Sons runners. There are many reasons to run with PPMD at Disney and community is one. It was nice to meet some new faces. A familiar face in the tent was Brian Denger from Maine. He’s a great running partner and we’ve run together several times, including half of the 2012 Boston Marathon with temps soaring towards 90. It turns out we were looking for about the same time in the half so off we went.

Waiting for the Half Marathon to get started with Brian Denger.

I’m sure Brian and I were in the small minority of runners happy with the 44 degree race temps. With the calm winds it couldn’t have been much better for comfortable winter running. We started in the B corral which provided a slightly slower start than planned. Not willing to do any aggressive passing, we passed the first mile in 7:45. After that it was smooth sailing up the dark highway to the Magic Kingdom.

I’m not one who needs or cares much for crowd support in a race but my pace always seems to surge when entering the Magic Kingdom. That quickly ended when we ran into the 1:40 pace group  in Tomorrowland. They were clearly ahead of pace and probably backing off a bit. It seemed to take almost a half a mile to get past them leaving us with another slow mile.

Seemed like a good time to check the phone.

It seemed like a good time to check my phone. — Actually I’m just taking bad photos.

Through the Magic Kingdom I was really beginning to enjoy the run. The pace was very comfortable and the sun was soon to rise. After a quick visit to the loo we ran the final 4 miles back to Epcot dropping the pace.

Runners barely swoop into Epcot before heading back out to the finish. Despite having run the half at nearly a training pace I didn’t let myself get caught up in racing to the finish. There was a marathon to run in less than 23 hours.

It was just about the most comfortable and easy half marathon I’ve run, all business turning in 13.1 miles about 13 minutes slower than the last time I ran this race. Perfect and on plan! I’m grateful to Brian for running with me. Without him I’d probably have gotten carried away and put my marathon in jeopardy. We quickly gathered our stuff and headed back to the hotel.

Most of all I’m grateful and fortunate that running has been so good to me and I’m able to share that gift by Running For Our Sons.

To be continued….

Walt Disney World Half Marathon by the numbers:

Time: 1:36:29
Place 257/22081
Age Group 32/1623

Splits 48:50.36 / 47:40.64
5K split in 23:03
10K Split in 45:28
15K Split in 1:09:11

Brian finished one place ahead of me and 14th out of almost 1000 in his age group!

Heading back to Orlando

In almost a month we are heading back to Orlando to participate in another Walt Disney World Marathon weekend as members of the PPMD Run for Our Sons team.  After last year’s 10K, I wasn’t so sure about going back and doing it again.  In fact we pretty much flew back from Orlando convinced we wouldn’t be returning in 2015.  Maggie and Kristina however were another story.  They were ready to do it again as soon as the 2014 10K was over.  They were going with or without us!
10K Finish
Then the winter got long and I settled into my annual winter doldrums and asked Chris “should we do it anyway?”  By this time, PPMD’s Run for Our Sons registration had already passed (registration was much earlier than past years and all the 10K spots were gone).  Maggie and Kris true to their word signed up for the 10K as soon as they could.  There were plenty of Goofy spots open when we changed our minds and Chris registered to do the half and the full marathon.  A goofy move 😉  A few months later, I signed up for the 10K when the Disney registration opened, rather Chris registered me.  So the Run4Will 10K team was good to go!

Since last year though, an amazing thing happened.  Our team grew!!  I am not quite sure how this happened and still wonder why people go above and beyond to support us and our cause.  I am actively trying to not puzzle this out and I am trying to just accept it and have gratitude.  What’s that you say??? Anne is trying not to over think something? Yup, I’m trying.  Simply put I am honored, flattered, awed, happy and incredibly blessed to have so many amazing people in my life.  So who makes up this group of amazing people?  They are family members near and far, friends old and new, runners and non-runners, and every shade in between.  If you send a note, connect on facebook over a joke, eat a meal with me, ask how I am doing, send a thought or prayer our way or donate financially, you are on this team! You are a part of my infrastructure, you keep me braced to face what lies ahead.

Tara and Logan 5KSo at the end of October, Tara and Logan Gill ran there first 5K in honor of William.  They did an amazing job and are super stars!!!  I suspect Tara mainly runs because of William!

Carolyn (Quinn) Prucher and Mike Prucher joined the team and are running Disney with us.  Carolyn lives in Boston were her family and is a friend from high school.  She’s run into Chris and William on some of their Boston adventures and knew who they were through my facebook posts.  Carolyn’s husband Mike is just as inspired as Chris and signed up to do the Goofy events while Carolyn is joining Kris, Maggie and I on the 10K course.

Did I say I feel blessed?

Please consider donating and joining the team.

Thank you!

Running Boston & Disney’s Goofy for PPMD

ImageAfter running the Disney half marathon, marathon, and 10K for Parent Project Muscular Dystrophy’s Run for Our Sons team over the last two years we decided perhaps it was time to take a year off before going back again. That idea didn’t sit well with us and didn’t last long. The support we received last year was overwhelming and we can’t take our foot off the gas.

We’re going back!

This time I’ll run the Goofy Challenge which is a half marathon on Saturday followed by the full marathon on Sunday. Anne’s friends Maggie Novello and Kristina Berryman have signed up once again too. Team Run4Will has more work to do.

I’m running the Boston Marathon too!

Back in 2010 the idea of running the Boston Marathon for PPMD inspired me to work hard and qualify for the race earning a spot for PPMD into the race. Next week I’ll run my fourth Boston Marathon in PPMD green and, as always, dedicate my run to boys like William who can’t. I’m proud and honored to be fortunate enough to do it.

~Chris