WUN Trailblazers Raise Funds and Awareness in Boston Marathon 2011

For the second year in a row, narcolepsy was well represented in the Boston Marathon. This year, three runners ran with Wake Up Narcolepsy - raising $29,000 towards funding vital narcolepsy research!

For one WUN runner, John, this was his first marathon. John was inspired to run by his nephew’s experience with narcolepsy.  In the past, John had run many 5ks, a couple 10ks and one Half-Marathon.  Taking on Boston was no small feat – but he trained hard and it all paid off on race day.

Kim & Monica - All Smiles Before
Running 26.2 Miles!

For the two other WUN runners, Monica and Kim – this was also a monumental day. Both women are mothers of children with narcolepsy. Cheered on by friends and family, both women finished the marathon in well under 4 hours!

The runners wore matching gear – with green shirts proudly reading “Wake Up Narcolepsy” across their backs.  The WUN shirts were eye-catching, which helped raise awareness.

During the race, a young woman approached WUN’s Monica.

“I like your shirt!” the woman exclaimed.

“Thank you.” Monica responded.

“I have narcolepsy,” the woman said before disappearing into a crowd. 

Monica didn’t see the woman again, yet it is moments like this that make a difference.  Narcolepsy representation in a high-profile athletic event like the Boston Marathon is a proud day.  

It is truly extraordinary what these individuals have accomplished.  Although they do not have narcolepsy themselves, they are determined to help others.

One of the WUN runners said it best:

“It's an honor to be able to help out in any way I can,” John describes, “I don't see it as a big deal because I know if the situation were reversed that they would do the same. I see this as our way of helping out a family member in need and that is the way we were raised.“ 

From the greater narcolepsy “family” - I’d like to extend a big thank you and congratulations to the WUN Boston Marathon 2011 team.

Lastly, I’d like to share an AWESOME news-clip interview of WUN runner Kim: Watch here! 

http://andover.patch.com/articles/video-marathon-mom-runs-for-her-son#video-5634838

Funds raised by WUN's 2010 marathon team are currently funding high-priority narcolepsy research at prestigious centers for narcolepsy in America.  For more information and to support WUN's 2011 Marathon Team, please visit: www.wakeupnarcolepsy.org.

The People Behind the Magic

Photography by Julie Flygare

While in San Francisco last week, I had a long list of things to do – visiting friends, family, museums, and typical tourist attractions.  One destination on my “to-do” list was slightly off the beaten path, but somewhere I’d dreamed of going for three years.  And so began my pilgrimage...

I crossed the city of San Francisco via two buses and boarded a train to Palo Alto. Arriving in sunny Palo Alto, I followed the map on my phone – walking past tall palm trees and a shopping mall. 

Finally, I stood at a busy commercial intersection, in front of a sleek glass and cement building.  I checked the address.  This was it.  Funny, I thought, it wasn’t what I’d expected.

Stanford University’s Medical School is responsible for many of the major advancements in our understanding of sleep, dreaming and narcolepsy over the past half-century.  It’s the home of two world-renowned scientists - Dr. William Dement and Dr. Emmanuel Mignot. 

I’d made the trip to Stanford’s Center for Narcolepsy – not for a diagnosis or medication. I’d come to meet “them” - the people behind the magic. 

Outside a sturdy metal door, a small sign read “Center for Narcolepsy.”  The door was open, so I entered on my own.  Inside, I saw white lab coats hanging on a rack and a long corridor of doors, but no people. 

They were expecting me, but not wanting to snoop around a science lab – I tiptoed back outside and rang the “after-hours” doorbell.  Promptly, four people emerged to greet me.  I re-entered the building.

“Hi, I’m…” I said, timidly.

“Nice to meet you! Yes, we’re expecting you,” one man said as he gestured for me to follow him.

We walked past large rooms of intimidating equipment to enter a back lab room where we met up with Mali, the head coordinator of the Stanford Narcolepsy Center. 

Once with Mali, we toured the entire lab - each scientist sharing an overview of what they were working on with me.  I learned about fascinating things like “sleep spindles” and zebra fish.  I shared a bit of my experience with narcolepsy with some of them as well.  

Although I try to stay informed about the science of narcolepsy, some of their words and descriptions went over my head.  I smiled and nodded just the same.  I think we all knew I didn’t speak their “language,” but it hardly mattered.  What mattered most was just being there – meeting face to face – in honor of something we both care much about – the future of narcolepsy.  

The money I raised while running the Boston Marathon with Wake Up Narcolepsy last year is currently funding one of the lab’s main studies - the Immunochip project to better understand the gene markers and autoimmune development of narcolepsy (read more here).

Meeting Dr. Ling Lin, a member of Dr. Mignot's narcolepsy
research group for over 18 years.

While speaking with one of the scientists, I admitted that I had yet to donate blood for Stanford’s research purposes.  Deciding there was no time like the present, they whipped into action getting the paperwork and materials necessary for me to give blood.

As luck would have it, my blood sample will be used in the Immunochip project – the very same study my marathon funds helped support.  We all laughed, realizing both my blood and sweat had gone into this study.  It was a proud moment.

I got to meet with Dr. Mignot during my visit as well. (I had the honor of meeting him once before - read here).  He was very enthusiastic about his research, including the Immunochip project. 

“We are awaiting some results very soon actually!” he said, lifting his eyebrows – with the wide-eyed wonder of a child waiting for Santa Clause. “We will get the data and then begin the analysis.” 

“There is so much to do,” he added, “but it’s also a matter of funding.”

My throat tightened – as I remembered the sobering reality of how underfunded narcolepsy research is in our society.

Yet Dr. Mignot remains dedicated and hopeful.

“I have some crazy ideas too,” he said with a smile – his French accent somehow making his crazy ideas so much more enticing.

I couldn’t help but chuckle. Dr. Mignot having “some crazy ideas” was great news. The Wizard of Narcolepsy wouldn’t be the Wizard if it weren’t for a few crazy ideas every now and again.

I used to think science was rigid and boring.  Yet this visit helped me see the art of science. Like art, science requires attention to big ideas and small details. Our understanding of what is “good” and “right” in art and science is always evolving – as boundaries are constantly being crossed.  Both disciplines build on the ideas of the past yet require people to “think outside the box” to move progress forward.

Most importantly, at the heart of science are people – the people who work with quiet love for their discipline and the people whose lives are the better for it.  From the bottom of my heart, thank you for all that you do. Your science is our hope. 

Dr. Mignot and the Stanford Narcolepsy Center Staff

Meet Kim

A few years ago, Kim vowed to never run another marathon, but this changed when she was given the opportunity to run the Boston Marathon with Wake Up Narcolepsy, Inc.  “I could not pass up the opportunity to help my son and the many others who suffer with narcolepsy,” she explains.

Eight years ago, Kim’s son, the oldest of three, was diagnosed with narcolepsy with cataplexy at the young age of six.  “Narcolepsy is not a joke,” explains Kim, “it is a serious disorder, kids do not out grow it. Although someone has narcolepsy, they are far from lazy and will prove to be harder working than the average Joe.”

Kim’s son, now 14 years old, is a mature young adult and a role model to all. “Since he was diagnosed at such a young age,” Kim describes, “he does not remember what it is like to not have narcolepsy. He has adapted by knowing his limits. Narcolepsy by no means defines him. He knows that he has to get his sleep at night and he is great about taking his meds because he knows they help him. He has also started taking a nap during the day at school and has not complained one bit. “

In addition to managing his narcolepsy at school, Kim’s son is an athlete.  He is close to getting his black belt in Tae Kwon Do and has won several medals for his efforts in wrestling.

Recently, Kim and her husband, David, watched their son overcome tiredness due to his narcolepsy at a regional wrestling tournament.  “He had to win one more match to make it to state tournament and he wanted it badly,” Kim explains.  Yet, he had already wrestled four matches that day (a lot for any wrestler).  

Late in the afternoon, with only the one match left, Kim saw her son laying his head in his lap and knew he was fighting exhaustion. Nonetheless, "he came from 4-0 down to win 7-4!" Watching this, Kim and David had tears in their eyes. “We know the struggles he has and to see him overcome his tiredness and win this was the best gift.”

Her son’s determination has inspired Kim to face the arduous training required for a marathon. On the day of Kim’s 18 mile training run, it was extremely cold, dreary and icy outside. “I was not prepared for the ice,” Kim reports, “and on top of that, I had to run by myself! My feet hurt and I ran slowly… All I kept thinking was how my son must feel and if he can go through life feeling so tired, I sure as heck can run 18 miles!”

Now, with over 450 miles under her belt and just 10 days before the marathon, Kim continues to work tirelessly to promote greater understanding of narcolepsy and raise vital funds for cutting-edge research.

To learn more and contribute Kim’s efforts: please visit her fundraising page.  As Kim so eloquently says, “From the bottom of my running shoes, I thank you for supporting me in my efforts to improve my son’s life and the lives of all those living with narcolepsy.”

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Please join me in thanking the Wake Up Narcolepsy 2011 Boston Marathon team - Kim, Monica and John for their extraordinary efforts on behalf of those with narcolepsy.  Their support is truly a gift to our entire community.

Wake Up Narcolepsy Runs Boston Marathon 2011

Wake Up Narcolepsy 2010 marathon team - celebrating after the race

In 11 days, over 25,000 people will run 26.2 miles in the Boston Marathon and three of these runners will race to raise awareness and funds for narcolepsy research with Wake Up Narcolepsy, Inc. 

Last year, I was one of four runners representing Wake Up Narcolepsy (WUN) in the Boston Marathon.  As a person with narcolepsy with cataplexy, crossing the finish line of the marathon was one of the most exhilarating and proud moments of my life.  (Read more here.) I wish I was participating again this year, but my body wasn’t quite ready so soon.

Nonetheless, narcolepsy will be well represented!  The WUN marathon team has trained through the cold snowy New England winter, while simultaneous raising awareness and funds for narcolepsy research.  (Click here to read Worcester Telegram news article.)

Their passion and dedication is truly awe-inspiring and I’m honored to tell you a little more about their inspirational stories on my blog.  

Meet Monica:

Three years ago, Monica’s first-born child, the oldest of three, was diagnosed with an acute onset of narcolepsy with cataplexy.  At the time, he was 11 years old and in the 5^th grade.  “My husband and I observe in amazement at our son’s quiet determination while struggling to manage his life with narcolepsy – cataplexy,” Monica reports.

Until facing narcolepsy in her family, Monica had no plans to run the Boston Marathon again. She’d run the marathon twice when she was younger, at ages 27 and 28 – before getting married and having children.

However, now in her mid-forties, Moncia is training for her fourth Boston Marathon.  Last year, she led the Wake Up Narcolepsy 2010 Boston Marathon team - finishing in 4:12:11 and raising $22,830 for narcolepsy research.

“I run for my son,” Monica writes on her fundraising page, “and will train hard because I know that this race will be another step forward on our quest for a cure for narcolepsy-cataplexy.”

Monica stayed true to her word - training hard despite inclement weather, injuries, and a busy family schedule. Her most difficult training run came at 12 miles – which she ran in a pool to stay off an injured leg.  She pool-ran for 2 hours and 20 minutes straight – hoping this would be enough to be equivalent to 12 miles. “It was just extremely boring,” says Monica.

It’s also been very difficult to fit in her long runs this winter. “I had planned to do my long runs on Fridays,” Monica explains, “but it seemed like every Friday it either poured, snowed or I had something such as a funeral to attend.“ 

She ended up doing most of her long runs on Saturdays.  “I was forced to do my 14 mile run on a Saturday evening around 5pm.  It was dark and cold and I had gone to my kids’ activities all day.  While I ran, the rest of my family was home relaxing after the busy day.  I just had no energy and didn’t want to be out running 14 miles alone. Our weekends are so jam packed that I couldn’t squeeze it in at any other time.”

Monica successfully overcame these training obstacles and now, just 11 days before the marathon, she is confident and ready.  She hopes to finish in around 4 hours and is excited to see her husband and three children cheering her on along the route. 

Yet, beyond the finish line is another equally important goal for Monica – raising money for cutting-edge narcolepsy research to find a cure for narcolepsy.

“My son with narcolepsy-cataplexy continues to trudge forward, never complaining,” she describes, “and I know my training for the marathon pales in comparison to the challenges he faces having to live with this disorder.”

To support Monica’s efforts and learn more – please visit her fundraising page.  All gifts are greatly appreciated.  No amount is too small - just like running a marathon, each step counts!

(Check back soon to learn about the other two Wake Up Narcolepsy marathon runners, John and Kim.)

Cherry Blossom Festival 2011

Photography by Julie Flygare

I'm not a morning person, but the blooming of the cherry blossoms in Washington DC is one of the few things that gets me out the door before dawn - three days in a row!  To get nice photos, it is important to get there early in the a.m. before the crowds. It is also much more peaceful in the a.m.

Over the course of three days, I took over 500 photographs, as I have an uncontrollable pathetic need to document this entire experience. Yet, the beauty of the cherry blossoms doesn't entirely translate into 2-D. While walking under bellowing canopies made up of countless pink and white flowers - it's hard to believe it's real. Nature made this? It's simply awe-inspiring.

However, I couldn't help but think of Japan and the Japanese people who have suffered so much loss recently with the tsunami.  Nature can be so powerfully beautiful and harmonious at times and yet so harsh and devastating at other times.  

Starting 99 years ago, Japan began giving the United States these beautiful trees as an on-going symbol of friendship.  In 1982, after a flood in Japan, 800 cuttings from our Tidal Basin were collected by Japanese horticulturists to retain genetic characteristics and to replace trees that perished in their flood.  When the time comes, I hope the United States will continue this cycle of giving with Japan and offer more cuttings to replace any trees lost in the tsunami.  

Although many of the cherry blossom festivals in Japan were cancelled this spring, it was an honor to celebrate Japan's beauty and perseverance here in DC with the fragile blooming of their trees.  

Japanese Lantern - over 350 years old

In closing, a Japanese Proverb and a few more of my photos:

Yo no naka wa

Mikka minu ma ni

Sakura kana

(Life is short, like the three-day glory of the cherry blossom)

Like these photos? Check out my photography website for more: www.julieflygarephotography.com!