The route has been changed to the Chicago Lakefront - we'll now be running 31.1 miles along beautiful Lake Michigan on the Lakeshore Drive Bike Path but we're still planning on ending at Buckingham Fountain.  http://runkeeper.com/user/MollyMcForsythe/route/2090812

Start time will be at 6am just south of Buckingham Fountain, heading north towards Rogers Park and then looping back south towards 57th street (Museum of Science & Industry).  Then back north to the fountain.  Parking is free near Montrose Beach as well as the Southside Cultural Center along the lake.  OR if you're a city dweller you can hop on your bike, walk or run over to meet us.  If you are interested in joining us feel free to email me or just pop over to the bike trail and we'll be in pink t.shirts running our hearts out!!

On May 11th Darcy Lawler (Braden's Aunt), Amanda Collins, Dusty Hardman (running from her hoe state of FL), Terri Preast (running from her home state of TN), Courtney Anderson and I are running for Landau-Kleffner Syndrome and we're going to run our hearts out!

DONATIONS ARE STILL BEING TAKEN IN HONOR OF BRADEN PEIFFER AND LKS:

https://www.rarediseases.org/about/support/donate/fg_base_view_p3

https://globalgenes.org/give/

Race Day Update!

Donations:

We're two weeks out from our race for Landau-Kleffner Syndrome and I'm really excited to report that we've raised just over $2000 in honor of Braden Peiffer and LKS!  All the proceeds go to research specifically for LKS.  We had one donation in the amount of $1,000 from an extremely generous donor.  As the donations come in I'm realizing what an amazing journey this has been, I've met and spoken to some incredible people and I thank you from the bottom of my heart for making this entire experience extremely special.

Race Day:

Many of you have asked about the route and other race day details.  I've attached a map of the race route, we'll be starting on the Prairie Path Trail (http://www.ipp.org/pdf/IPP-free-map-color.pdf) on the Aurora Branch which will feed into the main brain branch.  We'll be taking that to where the trail ends in Maywood on 1st Avenue.  From 1st Avenue we'll be heading over to Madison and head North on Harlem.  From Harlem we'll go to Lake Street and from there we'll be running straight to Buckingham Fountain for a total of 31.1 miles: (http://runkeeper.com/user/MollyMcForsythe/route/2028678)

We're planning on starting at 6am and because I run slow we're estimating a finish time between 1-2pm.  I'm welcoming anyone to cheer us on or run a part of the race with us. The more the merrier!  And because this an unofficial race we're just going to have fun, not feel any pressure and enjoy the journey.  Family, friends, and supporters are joining us for the last mile of the race - they'll be helping us with hardest part of it!  We'll also be joined on the last mile by Courtney Anderson who has fully recovered from this disease - a true inspiration!

On May 11th, 2013 Darcy Lawler (Braden's Aunt), Amanda Collins, Dusty Hardman (running from her home state of FL), Terri Preast (running from her home state of TN),  are running 31.1 miles in honor of Braden Peiffer and LKS and we're going to run our hearts out!

Donations are still being taken in honor of Braden Peiffer:

https://www.rarediseases.org/about/support/donate/fg_base_view_p3

https://globalgenes.org/give/

With just a few weeks left before my 50k run for Braden Peiffer who has Landau-Kleffner Syndrome I find myself getting tired, overwhelmed and look for inspiration to get me through my long runs.  Braden is always in the back of my mind, his struggles keep me going because at the end of the day my struggles w/ running are over when I'm done running.  Braden, his parents and brother continue to struggle with no end in sight.  

Can you imagine living your life that way every single day?  Clearly Braden, his mom and dad and brother all carry on with the belief that some day things will be better.  I believe this too, which is why I'm running for Braden and others affected by LKS.  I've submitted this race and Braden's story to CNN I-Report:  http://ireport.cnn.com/docs/DOC-930698 and 348 people have recommended this article.  Because of CNN I've been contacted by Courtney Anderson, now a 26 year old adult, who has over come LKS and wants to run with us!  Her story is an important one, it proves that the hope the Peiffer's carry with them is justified.

On May 11th, 2013 I'm running 31.1 miles along with Darcy Lawler (Braden's Aunt), Amanda Collins, Dusty Hardman (from her home state of FL) and Terri Preast (from her home state of TN), Courtney Anderson (IL) and we're all going to run our hearts out!

To donate to rare diseases in Braden Peiffer's honor:

https://globalgenes.org/give/

https://www.rarediseases.org/about/support/donate/fg_base_view_p3

http://lksrun50k.blogspot.com

https://www.facebook.com/molly.m.forsythe?ref=tn_tnmn

We made it to CNN I-Report!

My race for Braden and his struggle with the rare disease Landau-Kleffner Syndrome is just over a month away and I could not be more excited that this story is now on CNN I-Report!  So far it's been recommended by 95 people, not bad for such a small operation.

I'm hoping you'll take a look at the below link and "recommend", "like" and "share" this story.  Awareness is the first step to getting this disease the much needed research and hopefully some day a cure:

http://ireport.cnn.com/docs/DOC-930698

On May 11th I'm running 31.1 miles for Braden Peiffer who suffers from LKS and joining me are his aunt Darcy Lawler, Amanda Collins, Dusty Hardman (from her home state of FL) and Terri Preast (from her home state of TN) and we're going to run our hearts out!!!

If you still like to donate you can in honor of Braden Peiffer to the following:

https://globalgenes.org/give/

https://www.rarediseases.org/about/support/donate/fg_base_view_p3

I have shin splints - I'm so bummed out about this but I'm trying really hard to keep my head up, let the leg heal and stay positive that I will be running 31.1 miles on May 11th for Landau-Kleffner Syndrome and Braden.  I did run a half marathon recently and towards the end of my race there was a sign that said "Don't Give Up" - I tell my kids this all the time, so I had to take a picture of it.  I'm glad I have this photo because when I got the news of shin splints, I was more than frustrated!  I'm sure there are times where we've all felt like giving up.  The thing is, with rare diseases you can't just give up.  You have no choice but to put one foot in front of the other and keep going (just like running a race).  The hope is that some day you will be well, live a full life, enjoy the simple things us common folk take for granted.  It's just too big a gift to pass up, giving up is not an option!

On May 11th, Darcy Lawler, Amanda Collins, Dusty Hardman (from her home state of FLA), Terri Preast (from her home state of TN) and me are all going to run 31.1 miles in honor of Braden Peiffer who suffers from Landau-Kleffner Syndrome and we're going to run our hearts out!  

Donations:

https://globalgenes.org/give/
https://www.rarediseases.org/about/support/donate/fg_base_view_p3

What inspire's you?

I run because I love to run and many things inspire me to run.  But what inspires me to run every single time I run?  The fact that I CAN RUN.  Over two years ago I couldn't walk a block and forget running!  I'm so fortunate that I have medicine that I take that helps me function like a normal human being.  Don't get me wrong, I still have my bad days here and there but I can cope so much better with the medicine.

Lately when I've been running I try think about what it would be like to have this "skill" taken away from me again.  It makes me sad think about this.  My thoughts always turn to Braden and his struggle with Landau-Kleffner Syndrome.  He was born with language and the ability to use it and understand and slowly this is being taken away from him.  He's literally being robbed of a skill that enables him to participate in life just like we do:  sing songs, play games with his friends, learn at school, etc.  I can't imagine how frustrating this must be for him to wake up and want to say something but not being able to get the words out.

Imagine the worry and the stress his mother, father and the rest of his family experience on behalf of Braden.  We all want the best for our loved ones and I know Kris and Mark Peiffer desperately want the burden of this disease taken away so Braden can just enjoy parts of life we all take for granted.  I think they've done an amazing job, I look at Braden's picture posted here and the smile on his face says what amazing parents they are!  You can tell they take all the fear, stress and anxiety out of the equation for Braden and make life as easy as possible for him.  That is an amazing gift.

So when I run and I get tired I think of the Peiffer's and they inspire me to keep going because that's what they do every single day despite how difficult their day may be...I hope you all are inspired as I am by this story:

https://globalgenes.org/give/
https://www.rarediseases.org/about/support/donate/fg_base_view_p3

What does it take to keep Braden going? It takes a lot: a family that loves him dearly, a medical community that won't give up and a being a part of the community.

This is Braden Peiffer.  He suffers from a rare neurological disorder called Landau-Kleffner Syndrome. He's been suffering from this disease for eight years now.  I myself have a rare disease, Adrenal Insufficiency (a disease where the adrenal glands are no longer able to produce cortisol.  Cortisol is a hormone that helps fight illness and is essential for living).  I know first hand how difficult  dealing with a disease, let alone a rare one, can be.  Since being diagnosed and successfully treated for my rare disease (2.5 years now!) I've decided that I would run a race every year for another rare disease.  I feel blessed to be well and grateful that I can medicate and live a fairly normal life.   Last year I ran a half marathon for rare diseases and it was so much fun! It's time to pay it forward again and this year I've upped the mileage and I'm running a 50k in Chicago for LKS!!  I'm running with Braden's Aunt/good friend, Darcy Lawler and another friend Amanda Collins.  This is a solo race, no aide stations, no big crowds cheering us on.  I'm hoping that through this race I can raise awareness for LKS and funding.  Kids like Braden deserve the best start in life and rare diseases are underfunded.  I'm hoping you will contribute and help someone like Braden.  I'm asking people donate their money to one of two organizations: NORD https://www.rarediseases.org/about/support/donate/fg_base_view_p3 or Global Genes Project https://globalgenes.org/give/ and donate in honor of Braden Peiffer.  Your donations will help support research, legislation and research for rare diseases.

If you cannot donate money but feeling inspired then please do something great, donate your time volunteering or raising awareness yourself.  That alone can help someone suffering!

On May 11, 2013 I'm running a 50k and I'm going to run my heart out!