Thursday, July 4, 2019

It's Time for the Big Reveal - The Berlin Marathon!


In my last blog, I mentioned I have a very BIG race announcement for this fall.  Well, the time has come for the big reveal...

I'm thrilled to share that on September 29th, I'll be running the Berlin Marathon in Germany!
For those of you that don't know, Berlin is part of the Abbott World Marathon Majors, which consists of six of the largest and most renowned marathons in the world.  I've already tackled two of them (Boston and New York) - leaving just four more on my bucket list to conquer (Berlin, Chicago, London and Tokyo) before I can claim an Abbott World Marathon Major Six Star Finisher Medal.
Check out these recent facts about the Six Star Finishers:

Did you know that the Berlin Marathon is considered to be the fastest marathon in the world?  Eleven world records have been broken on the course, including just last year when Eliud Kipchoge crushed the course in an unbelievable time of 2:01:39.  Although I'm not aiming to break any world records, I am definitely looking forward to the flat and fast course this fall!

Here are my 3 goals for the Berlin Marathon:
1.  Make it to the starting line (and finish line) injury free.  Although I had found out I gained entry into this race (via the lottery) months ago, I've delayed sharing the news as I've been battling a nagging heel/foot injury - otherwise known as Plantar Fasciitis.  I've been diligently following a routine or resting after races, icing my feet, and stretching/massaging my calf muscles and the arches of my feet.  This seems to be working.  Fingers crossed as this will be my first full marathon in 3 years.  My main goal is just to get there and finish the race!
2. Complete the course in under 6 hours 15 minutes - which is the official course limit.  That's the time I need to achieve to claim my third star and I think it's a reasonable goal.  It's faster than I ran my last full marathon (New York - 6:31:51), but much slower than my PR (Rock n' Roll DC - 4:58:54).  Plus, the New York City Marathon course had quite a few hills/bridges.  I should be able to run faster in Berlin (even though I'm three years older).  Again, fingers crossed!
3. Raise a minimum of $1815 for HCU Network America.  Earlier this year, when I tackled the Miami Half Marathon, I set a fundraising goal of $10,000.  I fell a bit shy of that goal.  This is the amount I need to raise to make it to my "Fundraising Finish Line".  If you'd like to help me achieve that goal, please click on the link here to donate:

Stay tuned for updates on my Summer Marathon Training, Fueling Techniques for Rare Runners, HCU Hero Stories, and the reveal of the rest of my Fall Race Calendar.

Saturday, March 30, 2019

Spring is coming...

Spring is coming and there's lots of updates on the horizon!

First, let's do a recap the last two months:

  • I completed the Zooma Love Run Challenge that began at the beginning of the year - running at least 1 mile a day for six weeks.  This really helped start off the year with consistency.
  • I participated in the "See Rare Run" virtual 5K on February 28th, otherwise known as Rare Disease Day
  • I tested a Virtual run app called "Racery" for HCU Network America.  We plan to utilize it in May for a fundraiser.
  • I completed the Lucky Leprechaun 5K with my husband.
  • I was selected as one of the Ambassadors for the Outrun Rare Team!  This group was founded by a Canadian elite runner named Dave Proctor.  Dave's son, Sam, has an extremely rare disease called Relapsing Encephalopathy with Cerebellar Ataxia (RECA).  It's so rare, that Sam is one of only five people in the world with this diagnosis.  Dave founded Outrun Rare to raise awareness for the 1 in 12 people in Canada (like his son) that have a rare disease and he has set a goal to raise $1 million dollars for the Rare Disease Foundation.  Please take a few minutes to check out the Outrun Rare and Rare Disease Foundation's websites, and like/follow them on social media:

Now, onto upcoming April events:

  • I'll be running the Cherry Blossom 10 Miler on April 7th.
  • I'll be meeting up with the Executive Director (Danae' Bartke) and President (Margie McGlynn) of HCU Network America on April 23-24th as they will be in town to participate in a panel discussion on Newborn Screening.
  • I'll be running the Pike's Peek 10K on April 28th.  
  • And of course, there's my favorite April running event, the Boston Marathon.  As many of you know, Boston holds a special place in my heart.  It's the world's oldest and most prestigious annual marathon.  I've been fortunate to have had the opportunity to run it 4 times and each experience has been unique and special.  This year, I'll be watching the Boston Marathon feed on April 15th and tracking my friend, Chris Hummel, who will be running and raising awareness for Homocystinuria (HCU) as part of the Running for Rare Team.  I had an opportunity to interview Chris a few weeks ago.  Like me, Chris' son, Will, was born with HCU.  You'll be able to read about Chris' journey to the Boston Marathon in April's HCU Network Newsletter.  In the meantime, check out this course preview, get excited to watch the 123rd Boston Marathon and cheer on Chris:

Stay tuned:

  • Within the next few weeks, I'll be making two very BIG race announcements for this fall.  My training has already started for these events and I can't wait to share my new goals with you!  Want a clue?  Maybe instead of saying two BIG race announcements, I should have said one big announcement and one MAJOR announcement?  

Friday, February 1, 2019

Race Recap - 2019 Miami Marathon

I'm happy to report that the Miami Half Marathon was a success!  Here's a quick recap and some photos from race day:

I woke up around 4am to shower, get dressed, eat breakfast, and head out to the starting line of the race.  For breakfast, I had some coffee, a Vitaflo HCU Express20 with water, 3/4 of a banana, and a coco banana golden bar.  All my race gear was neatly laid out from the night before which made things easy.  I attached my race bib to the front of my shirt, and a picture of all the HCU Heroes on the back.

The forecast was calling for heavy rain and thunderstorms, not an ideal weather prediction, but at least it wasn't cold.  I grabbed a throwaway rain poncho - just in case.  My Mom (yes, she still travels to my races from time to time) wished me luck before I headed out the door at 5:30am.

The starting line was conveniently just a few blocks from my hotel (YVE Hotel Miami).  On my walk over, I noticed it wasn't raining as predicted and wondered when it would start.  I got to the starting line in plenty of time.  Although the race officially started at 6am, my corral didn't end up starting until almost 7am, something I wish I had known before setting my alarm to 4am, but at least I didn't have to worry about being late.  About 15 minutes before my start, I consumed a GU energy gel.

Shortly after the race began, I decided to discard my rain poncho.  It was a risky move, but it ended up being the right one.  It was extremely humid, and the poncho was adding an extra layer of warmth that I didn't need.  It remained overcast throughout the race, but fortunately, the predicted rain never showed up.

The first few miles of the race, we ran past all the cruise ships in the port of Miami.  I took in all the sites and snapped a few photos along the way.  I slowed down at every water station to make sure I stayed hydrated and consumed additional GU energy gels about every 4 miles.

Along the way, there were more than a few aches and pains, but each time I struggled with the race, I switched my focus to the reason behind my run - the amazing HCU Heroes.  Visualizing all those faces and reflecting on their stories really helped me push through the hard parts of the course.  When I got close to the finish line, a wave of emotion came over me and I put in one final sprint.

After crossing the finish line, I happily claimed a new shiny race medal to add to my collection and met up with my Mom who was spectating at the race.

We then headed back to the hotel so I could quickly refuel with another Vitaflo HCU Express20 and shower.  After the hotel pit stop, we found an awesome German restaurant(Bavaria Haus) nearby that offered some healthy low-pro lunch options.  This salad was amazing! 

And equally amazing, but not pictured here, were the salty fries - a personal favorite post-race indulgence of mine!  

Over lunch, I did what many runners do after a big race, I started planning the next one!  After all, it's only January, and my year of running has just begun.  Stay tuned for an announcement on my next race adventure!

Saturday, January 26, 2019

Race Day Ready!!!

This is my last blog post before the “big race” tomorrow!  My race gear is all laid out.  I’m rested, hydrated, carb-loaded, and ready to cross the finish line and become #MiamiFamous.

Thank you all who have continued to donate and support my fundraising efforts for HCU Network America.  As of today, $6576 has been raised in this campaign!!!  The funds will help provide resources to HCU patients and families as well as support advancement of diagnosis and better treatments for HCU.  If you need any extra motivation to donate, look no further than the HCU HEROES stories on my blog.  I’d like to highlight one family in particular, the Edwards Family, who tragically lost their 8 year old son, Zackie, due to complications of HCU just three months ago.  No family should have to go through a loss like that!  My motto for tomorrow will be #ZackieStrong and I’ll be thinking about #88.

If you’d like to make a donation in honor of Zackie or any of the amazing HCU HEROES, please click on the link below which will take you directly to my fundraising page for HCU Network America.

Friday, January 25, 2019

Miami Bound!

Well the time has come, I'm off to Miami today!  I'm excited to bring awareness to HCU by running the Miami Half Marathon and I'm also elated to be escaping this cold winter weather - even if just for a few days!

Here's a sky video of the race from a few years ago to give you a taste of what I'll be experiencing on Sunday - cue the palm trees!

As a reminder I’m running in honor of these amazing kids and hoping to raise $10,000 for HCU Network America to provide resources for HCU patients and families and to support the advancement of diagnosis and better treatments for Homocystinuria (HCU). 

If you’d like to donate to HCU Network America in honor of any of these HCU HEROES, please visit my fundraising page for the Miami Half Marathon:

I’ll check back in with an update before the race on Sunday.  Have a great weekend everyone!

Thursday, January 24, 2019

HCU Heroes - Kaden's Story

I met Kaden's parents, Bridgett and Basil, at the very first HCU Conference in Denver, Colorado back in 2011.  That was actually the very first time I'd met any other HCU patients or parents - the beginning of what is now many connections in both the HCU community and the greater rare disease community.  The Zaidi family have been great advocates for HCU and I'm thrilled to run a mile for their son, Kaden, in the Miami Half Marathon this upcoming weekend.

Here's Kaden's story in the words of his Dad, Basil:

I remember the day Kaden was born like it was yesterday....even though I almost passed out in the delivery room! It was in the very early morning of 10/24/2008, about 30 minutes past midnight to be exact, when he brought our family count to four. He was as perfect as we could have ever imagined him to be.

It was about two weeks after his birth when we received a phone call from his pediatrician saying that he had elevated levels of methionine, detected through  newborn screening & that he could possibly have what is known as Homocystinuria. While we'd never heard of Homocystinuria, we were assured that it was likely a false positive and that another blood draw should be done to confirm. Within a few days the confirmed diagnosis of classic HCU was provided to us and we were completely at a loss as to the lack of information that was available surrounding this disorder. Our pediatrician that had 30+ years of experience struggled to articulate exactly what HCU was.

Desperate to get information from an experienced professional, we were put in touch with the genetics group at Phoenix Children's Hospital and it wasn't until after we met the geneticist and dietitian that we understood the importance of managing this disorder through diet and medical formula.

Ten years ago there wasn't near the amount of information, resources and most importantly, a community to lean on and share experiences with. These developments have been instrumental to our family over the past ten years. Kaden is remarkable in making good choices and being conscientious as to what he's eating as well as the importance of getting the protein he needs through medical formula. While he definitely needs a reminder, he understands the nutritional value that comes from his formula and the positive effects of taking his vitamin supplements and betaine. We couldn't have asked for a stronger and more resilient son! 

If you'd like to make a donation to HCU Network America in honor of Kaden or another HCU Hero, please visit my fundraising page for the Miami Half Marathon:

Wednesday, January 23, 2019

HCU Heroes - Ella's Story

I first connected with Ella's Mom, Kaiti, back in 2013.  Ella was just 5 months old at the time, but thanks to the internet and Facebook, we were able to start a dialog and have remained in touch over the years.  I'm thrilled to dedicate a mile to Ella in the Miami Half Marathon!

Here's Ella's story in Kaiti's words:

The greatest blessing I received was on September 15, 2012 when I became a mom for the first time!  Ella, our first child, was born a healthy and beautiful baby girl.  Holding her in my arms and looking into her eyes,  I was immediately in love with her.  My husband and I took her home from the hospital at one day old.  Then, when she was only 4 days old, we received a phone call saying her newborn screening came back abnormal.  We were told it was most likely a false positive because her condition is very rare.  We took Ella in for more blood work and quickly confirmed that she does have a rare disorder called Homocystinuria.

Ella is now six years old and doing absolutely fantastic.  She is healthy because she eats a very restrictive diet of only 9-10 grams of protein from food per day, she drinks Hominex 2 twice per day, and takes vitamins along with Betaine to help her break down the protein in her body.

Ella is a smart, caring, creative, and goal driven little girl!  She is learning to read nutrition labels and count the grams of protein she eats daily.  The hardest parts of having Homocystinuria are getting her blood work drawn on a regular basis, knowing there isn't a cure, and telling her no she can't eat certain foods other kids are eating.

We are thankful for newborn screening, thankful for a wonderful metabolic doctor here in Michigan, thankful for those that raise awareness and funds for HCU research, and thankful there are low protein foods and formula that are available for Ella.


We tell Ella that God made her so special when she was created! 

If you'd like to make a donation to HCU Network America in honor of Ella or another HCU Hero, please visit my fundraising page for the Miami Half Marathon: