Run4Leah-CureNF

One Week and Counting - Show Your Support Today!

 

We are just one week away from Marathon Weekend and our runners are coming through the home stretch with their spring training efforts!   Get involved and show your support by donating today via our secure Firstgiving website: https://www.firstgiving.com/fundraiser/run4leah/2017

 

Share the link with colleagues, family and friends and don't forget to notify your Company of your charitable donation if they have a matching program.  

 

It's our 10th Anniversary fundraising for Leah, May is NF Awareness Month and our goal is $50,000! This money has always gone and will continue to go directly towards funding scientific research to help find a cure for Leah and others with NF2.  We are currently closing in on $14,000, just $36,000 shy of our goal for 2017!

If you have already donated, thank you so much for your generosity in making Run4Leah/Cure NF a success!

 

Happy 17th Leah!!

MAY is NF Awareness Month and May 6th is Leah's 17th Birthday!

Leah has spent 10 years, more than half her life, dealing with Neurofibromatosis Type 2. NF2 is a genetic neurological condition where tumors develop on nerves, in the brain and/or along the spinal cord. Since being diagnosed ten years ago Leah has endured 13 major surgeries and many more small surgeries and procedures. She is deaf in one ear, has balance issues, facial paralysis and has had a spinal fusion, but none of these things hold her back.  Leah is determined not let NF2 define her, or her life, and continues to pursue her many passions; running, hunting, fishing, cooking and spending time with family and friends.  Less than two weeks since her last surgical procedure and Leah walked a 5K with her dad John this weekend, to honor her late grandma, Adelaide Manth, who passed away due to cancer and later today, Leah will give an Accordion recital.  Not your typical post surgery recovery!!

If you would like to honor Leah for her birthday, or in recognition of May being NF Awareness Month, please consider using the Firstgiving link in the lefthand  navigation bar of this blog.  Just click "DONATE", and you will be directed to the secure Firstgiving website.   All proceeds will go towards NF2 research, hoping for better treatment options for Leah and others living with NF2.

As always, thank you for your support!

Heading Back to School

Post - Op Update #4, Monday May, 1st

Leah returned to school today.  She'll have to lay low and miss a couple weeks of track practice, while remaining on a soft food diet and Tylenol as her throat continues to heal.  Although still a bit tired, Leah feels pretty good overall.

Much appreciation for all the prayers and well wishes!

Sprung from the Hospital!

Post-Op Update #3, Thur, Afternoon

 

Well, it's been a day of "early releases" for Leah.

At 4am she was released early from the ICU after having a very medically stable night and showing excellent signs of recovery by the hour.  After a soft, liquid lunch and confirmation that all vital signs remained normal, she was not developing a fever and all systems were functioning, Leah received the "all clear" for an early release from the hospital today!

Leah and her parents will remain close-by in a family centered guest house for children and families receiving care at local Boston hospitals.  She'll continue to be in contact with her medical team and closely monitored by her mom, who just happens to be a pediatric nurse practitioner.  Additionally, the push now a days is to get healthy kids who are in for surgeries out of the hospital as soon as possible and away from the sick patients and the risk of picking up a germ/virus.  They'll have a follow up with the surgeon prior to flying home on Saturday. 

Although still a major surgery, this one was one of the easier ones for Leah, so hopefully it won't sideline her for too long as she winds up the school year.

The Manth and Patterson families thank you for all of your love and support - stay in touch for more updates!

Just 5 weeks until Marathon Weekend - Leah hopes to be fully recovered and greeting visitors to our Run4Leah/CureNF expo booth.

Together, we CAN make a difference!

DONATE TODAY AT: http://www.firstgiving.com/fundraiser/run4leah/2017

 

 

Leah's Out of the ICU!

Post-Op Update #2 Thursday, April 27 - 7:30am

 

Fantastic news this morning!  Leah had a good night and was  moved out of the ICU and into her own room this morning.  Her throat is quite sore, but otherwise she feels pretty good.  Will have another update later today.

 

Leah's Surgery Goes Great!

Post-Op Update #1

Today, April 26, Leah’ had her 13^th major surgery in 9 years as a result of Neurofibromatosis-Type 2.  She had her airway tumor de-bulked again as it continued to obstruct her airway, requiring her to use a C-Pap machine at night while sleeping. She travelled to Boston Children's Hospital yesterday for a series of Pre-Op appointments and testing, which all went well.

Leah Pre-Op being visited by a couple of the hospital clowns!

 

All went fantastically today!  Dr. Rahbar was very pleased with the amount of tumor he was able to de-bulk and was able to stay clear of Leah's vocal cords.  She'll spend the night in the ICU for close monitoring and hopefully a good night's rest.  

Despite all she'd been through, Leah even broke out a bit of a smile as she came out of anesthesia and was greeted by her parents.

 

Please keep Leah in your thoughts and prayers!!

We'll have another update tomorrow.

 

 

Another Surgery for Leah

As you know from our periodic updates, Leah’s team of doctors has been keeping a close eye on the tumor in her airway. This tumor is just above her vocal cords and does partially obstruct her airway and breathing, so she needs to use a CPAP machine while sleeping.  Given the size and location of the airway tumor, the surgeon in Boston recommended slowly debulking the tumor instead of going in and removing it all at once.  

Leah underwent her first procedure to debulk the airway tumor in August of 2015.  Although the surgery went well, she still needed to remain on the CPAP machine.  Last summer we had hoped to complete another step in debulking her airway tumor, however, the removal of her vestibular schwannoma (VS) hearing tumor was a higher priority.  Now that things have settled down from that surgery, we are heading to Boston Children’s Hospital on April 26th for another round of airway tumor debulking, with the hopes that Leah can be taken off the CPAP machine, which as you can imagine, would be huge for a teenager!

This will be Leah’s 13^th major surgery in 9 years.  Please keep Leah in your thoughts and prayers!!

Finally, our 10^th year of fundraising for NF2 research is well underway.  However, having just returned from Capitol Hill, we know many research programs are facing scrutiny and funding for the National Institutes of Health (NIH) could be slashed under the newly proposed budget.  Independent fundraising efforts such as ours, is more critical than ever.  Your help in reaching our $50,000 goal in 2017 is greatly appreciated - Thanks you to all of you who have already made a donation!  

To show your support and make a donation, please use the information below:

By Check:  Please make checks payable to NF Northeast and note “Manth/Run4Leah” in the memo line.  Please mail checks to Run4Leah c/o Dave Manth 2922 Walk Drive, North Tonawanda, NY 14120.

Online Donations: www.firstgiving.com/fundraiser/run4leah/2017

Please keep Leah in your thoughts and prayers

Run4Leah 5K$aturday Challenge

 

 

Attention all runners and walkers!

 

To kick off Marathon weekend and to celebrate 10 years of making a difference for NF2, Run4Leah is organizing a special 5K$aturday challenge to welcome newer runners and returning runners wishing to tackle a shorter race distance.  (Remember- there is no Relay team option this year at the Buffalo Marathon)   

 

Getting involved is easy!  

First: Officially register as a participant in the John Beishline Memorial 5K, through the Buffalo Marathon website
: http://www.buffalomarathon.com/page-5k/

Next: email run4leah@gmail.com and tell us you want to participate in the Run4Leah 5K$aturday
challenge and raise $100 for Neurofibromatosis 2 (NF2).  

 

Each 5K$aturday runner will receive a Run4Leah team t-shirt at our NF2 Expo Booth when they turn in their $100 of collected sponsorship donations.  If we can get a total of 50 runners, each committing to raising $100, we will be $5K closer to our $50,000 goal for 2017! 

In addition, all 5K racers will officially receive from the Buffalo Marathon: 

• Official 5K technical shirt at registration
• Finisher Medal for completing the event
• Post Race Party Immediately Following
• Age Group Awards

See more details at:  http://www.buffalomarathon.com/page-5k/

Stay tuned for some Run4Leah group training runs on the weekends leading up to Marathon weekend.  No stress, no pressure - run at your pace and meet some fellow beginners who want to make a difference and end NF2.

 

The 5K Race Day is Saturday, May 27 and start time is a very reasonable 8:30am! 

Any questions, contact our Run4Leah Team Coordinator

Anne Patterson:  run4leah@gmail.com

 

For online sponsorship donations:

http://www.firstgiving.com/fundraiser/run4leah/2017

 

A Decade of Making a Difference in NF2

 

It’s hard to believe that YOU have been helping us raise awareness and research funding for NF2 for 10 years now!  Leah was just 7 years old when diagnosed and now she's a Junior in High School.

 

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​What started out as a small group of Leah’s family members looking to 'run for a reason' has evolved into 827 runners, 1000 volunteers and hundred's of thousands of dollars raised over the past 10 years for NF2.  Our signature green NF2 T-shirts & hoodies have become a staple in downtown Buffalo on Memorial Day weekend, drawing attention to our cause and reaching out to others impacted by Neurofibromatosis.  You have helped us make a difference in our vital mission to find effective treatments and ultimately a cure for NF2.  

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In honor of Leah and the ten years she and her family have spent rising to the daily challenges of NF2, we are increasing our annual campaign goal to $50,000 for 2017!

Help us meet our goal by making a special anniversary donation or sponsoring a Run4Leah team member in the 5K on Saturday, May 27 or Full Marathon or Half Marathon on Sunday, May 28, or in honor of a volunteer!

 

Donating is Easy:

To Donate On-Line: Visit firstgiving.com/fundraiser/run4leah/2017

Use of this website - it is fast, simple and secure - simply click on the green "DONATE" icon.  If making a donation to sponsor a runner/walker, please list the participant's name in your donation message.  The donor may still remain anonymous, if desired.  

To Donate by Check: Make checks payable "NF Northeast" and note "Manth/Run4leah" in the memo line. 

Mail Checks to: 

Run4Leah c/o Dave Manth, 2922 Walck Drive, North Tonawanda, NY 14120

To Join Our Run4Leah Team: Email team coordinator, Anne Patterson at  run4leah@gmail.com.

Together, we can continue to make a difference for Leah and all of those living with NF2

 

From Chemo to Wyoming!

Who would have thought that a normal day at Children's Hospital in Buffalo for Leah's Avastin chemo treatment, would lead to a trip of a lifetime for our family? A quick conversation with a total stranger three years ago in the Admission Department regarding Leah’s camouflage Otter Box phone case has led to a game-playing companion to pass the time during chemo treatments and a life long family friend, Tony Dee. If you know my sister Leah, you know she's a very good shot and one heck of a hunter. Well Tony, being a fellow hunter too, recognized this and organized a trip to Wyoming for my mom & dad, me and Leah so that Leah could hunt the pronghorn antelope and get away from the hospital and chemo treatments. He worked with the wonderful organization, Muley Fanatics to obtain the necessary tags. Muley Fanatics Foundation is a non-profit organization that ensures the conservation of mule deer and their habitat and provides supporting services to further the sport of hunting for adults and youth and promotes sound wildlife management.

Tony grew up in nearby Idaho Falls, Idaho where his parents still live today. After two days of hunting with Tony, his father Bob and his son Dawson, we came upon a trophy pronghorn and Leah made an ethical 150 yard shot (no surprise there!) and harvested a beautiful pronghorn.

Crossed Arrows Taxidermy, a business that works with Muley Fanatics, is preparing and donating the pronghorn’s mount to Leah. Now while hunting was an adventure enough, Tony wanted to show us, especially my mom, the true beauty of Wyoming!  So we picked up Tony’s mother, Liz, and away we went. We travelled through Grand Teton and Yellowstone National Parks, staying in Jackson Hole, Wyoming, Mammoth Springs and the even the Old Faithful Inn along the way. We saw bison, mountain sheep, grey wolves, coyote, moose, mule deer, elk, and antelope all up close, along with some of the most unique and beautiful sites in the world. We arrived at Mammoth Springs just in time to see the elk bugle at the beginning of the rut (mating season for you non-hunters).

As a family, we all said it was the most spectacular part of the world we had ever seen. We ended our last night by listening to live music at the Old Faithful Inn as we sat teaching our wonderful new friends, the extended Dee Family, our favorite card game, “May I.”  This story is just another reason that while we wish Leah did not have NF2, we would have never had the chance to get to know this wonderful man, Tony Dee and his family, and as a result got an experience of a lifetime!  And for Tony, his extended family, the great folks at Muley Fanatics and the generous team at Crossed Arrows Taxidermy, they had a chance to learn a lot about NF2, Leah’s achievements and her challenges as we shared stories, camp fires and long rides and walks together throughout Wyoming.

 

(shared by Christopher Manth)