Author Archives: aphancock

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!

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!

Tomorrow our Disney running adventure begins.

Tomorrow our Disney running adventure begins.  It’s a 4am wake-up call to ensure we get to the airport on time for our 7:30am flight to MCO. Luckily we booked with Delta as Jet Blue is taking a vacation.  Air travel with a wheelchair is a challenge and getting there early should help make the process smoother.

For my part, I am a bundle of nerves and emotions.

I am nervous about the flight and whether or not William can keep his cool.  Managing his chair and special power-assist wheels has awakened a level of anxiety in him we have never seen before.  These wheels have been a Godsend and have kept him wheeling on his own for a lot longer than possible with manual wheels. BUT the anxiety, it can be unbearable!!!!  He relies on his chair just as we rely on our legs. We’ve talked the plan through multiple times and have worked very hard to remind William he can control himself and that everything will work out.   He’s come around lately so I think he is ready.

I am nervous about my event, the 10K.  In all honesty I will walk 99.5% of it.  I am nervous about it regardless because its 6.2 miles.  Luckily I will not be doing it alone!!!

And here’s where the emotions take over… when I got the idea of participating in the Disney Marathon weekend for PPMD and RFOS I never imagined I would be doing it with a team.  Wow! I also never imagined that in September 1981, I would meet some amazing friends who would still be supporting me, 31 years later.  I can’t express how grateful I am to all of these amazing people.  People with their own families, lives and challenges… but these people are special.  They have huge hearts, amazing compassion and tremendous empathy.  First and foremost the 10K team is Kristina Solan (Berryman), Maggie Bedosky (Novello), and myself.  But the team also includes Tara Patti (Gill), not only has she been a rock for me, despite her own challenges, but she also sent us a box of amazing team shirts.

Team shirts from an awesome person.

Awesome team shirts!!

The shirts took me by complete surprise but then I thought, no, that’s Tara! The team includes Bridget Habesland (Andersen), who keeps sharing and reposting our blog updates and pleas for donations.  But that’s not all, the team includes everyone who’s donated to our cause; Mt. Carmel school buddies, John S. Burke buddies, Patch American High buddies, William & Mary buddies,…  Without all of you, we wouldn’t have exceeded our fund raising goals- yes, exceeded!  The team includes our families that not only donated funds but also donate their time and familiness to us constantly.  And finally, the team includes everyone who has taken the time to read our Facebook posts or blog entries about life with William and life with DMD.

For Chris and I, the journey with DMD began in pitch black darkness and an unimaginable suffocating despair.  You are all candles in the darkness that help us find our way.  With great sadness I heard about the passing of a 16 year old young man with DMD this morning.  My heart breaks for his family and their loss.  It’s everyone’s future, I get that, but 16 is too young and so is 10, 20, 25, 30…These kids deserve more time and by supporting us you have helped bring us one step closer to finding more time for these kids.  Thank you.

Why I’m doing this 10K?

Why I’m doing this 10K…an enumerated list????

#1 My son has Duchenne Muscular Dystrophy.

#2 PPMD and Run for Our Sons raise money to support research.

#3 the 5K was sold out….

#4 It’s a great excuse to visit Florida in January when Massachusetts is your home.

#5 I sorely need to stop getting fat……

In truth I find myself pondering why I am doing the Disney 10K often, if not everyday.  The reasons hit me at random moments; while I vacuum; while I cook; while I sit at my desk at work; and while I commute to and from work.  Not all of the reasons are profound as you can see above.

As we get closer to January and as we get closer to the Thanksgiving holiday, a time for counting our blessings, I am feeling inspired to share some of my more considered reasons.

#6 humility

hu·mil·i·ty
noun \hyü-ˈmi-lə-tē, yü-\
: the quality or state of not thinking you are better than other people : the quality or state of being humble

Last January was our first PPMD Disney Marathon weekend.  Put simply, it was a powerful experience.  Being with other families like us was life affirming.  But what stood out to me and what became my biggest take away from the event were the people we met that didn’t have sons with DMD.

One family with a young son and daughter were participating in multiple events.  Naturally I assumed their son had DMD.  Heck I assumed every boy there had DMD, my stealthy powers of MD identification were in full swing.  But this family was there for a friend’s son, not their own.  I was relieved for them and their son and thought wow that’s really cool.   Compassion and Love

A young woman, I think in her late twenties, was there with her husband.  She said she lived locally and participates in the weekend every year in honor of her cousin.  Her cousin who can no longer cheer her on because he cannot travel by plane anymore.   But she still shows up for him and boys like William every year.  She trains for the event throughout the year despite having a job, three kids and a full life.  Dedication and Love

I took these memories home with me and internalized them.   Then two of my friends from grade school volunteered to do what this family and cousin do, Run for Our Sons!

Maggie and I grew up in the same rural neighborhood in NY State.  We went to school together from 2nd grade through high school but lost touch in our junior year of college; I would bet this was my fault.  Kristina and I haven’t seen each other since 8th grade graduation; we went to different high schools the following year.   But despite the passage of time and lack of regular communication they want to be there for me.  Their selflessness is overwhelming and I am beyond grateful for them both.

The irony of my life with DMD is how much I have stretched and grown as a human being and this is where the humility comes in.

I am doing this 10K out of humility.

I am humbled by the strangers I met last January, my old friends who are on the 10K journey with me, my friend who keeps me going with my training by texting me about her own, and my old friends from grade school, high school and college who have donated to this cause despite the fact that there are so many causes out there in need of support.

When God closes a door, he opens a window.  Thank you for all crawling through that window and bringing me out of the darkness.  The darkness can swallow you but the light of love will keep you going.

familby

A season of hope…

When we were first adjusting to life in the shadows of Duchenne, we didn’t know what to tell William or how to explain what would happen to him physically.  He was 5. How does any parent know what to say to a child whose future has been irrevocably changed?  My explanation at the time felt lame.  I told him that his muscles didn’t work like other kids and one day he might need a wheelchair to get around but doctors and researchers were working very hard to find a way to help his muscles stay strong.  I didn’t tell him he would stop walking before the age of 10.  I didn’t tell him cures are complicated and that everyone’s DNA and body chemistry make it difficult to find that one magic pill.  How could I?  Chris and I were devastated, heartbroken, and scared.  We worked hard to keep this from William and give him “normalcy.” He was a baby after all.

William asked me one night before bed to put a sticky note on the bookcase near his bed.  He wanted to know right away if they had found a cure as he slept.  So that night I wrote, “No cure found overnight, but they are still working.”  This note has been there ever since, saying the same thing.  As I wrote it out I thought I would never write “They found a cure William, you are going to walk again!”  Never!  I didn’t actually have hope or believe that the future was anything but bleak.

I was wrong.

First, life despite DMD has been normal, DMD is our normal and life is good.

Second, I am not a liar anymore, I have hope!  Yesterday Sarepta Therapeutics announced that they were submitting a New Drug Application to the FDA for Eteplirsen; a potential therapy for skipping the broken Exon that prevents the muscules from producing enough dystrophin.  In this case, Eteplirsen skips Exon-51 (William’s version of DMD is an in-frame deletion of exons 45 and 46). While this drug isn’t an immediate cure for many boys it’s an important milestone for all.

Pat Furlong, president of Parent Project Muscular Dystrophy said it best in her blog posting yesterday, “This is a great day for the Duchenne community. Where at one time we saw nothing but a hopeless end, now we see nothing but endless hope. We are thankful to this community for all the work it has done together to raise awareness about the urgency to find treatments for all patients.” Yes, Pat, yes!

For the many wonderful people who have supported PPMD on William’s behalf, thank you!  You have given us and all families that live with Duchenne the gift of hope, and that is a gift not easy to come by.

-Anne

“You’ve got to be in it, to win it!”

Beach2BeaconMapChris found out yesterday he won the lottery.  The TD Beach to Beacon 10K Road Race lottery that is.  This caused some excitement as William thought Chris won some money.  I’m sure William was thinking of all the Nintendo and Apple products he could get in those 30 seconds of confusion.

Chris is very excited with his lottery score and hopes to run into Joan Benoit Samuelson.  Stay tuned for more race info.

~Anne