Run4Leah-CureNF

Our Tenth Successful Run4Leah Marathon!

Dear Run4Leah/CureNF Runners, Volunteers & Donors:

The finish line is packed away, runners times are posted, extra t-shirts are boxed up, and many of your bib numbers and finishing medals have been tucked away as a keepsake or proudly displayed as a reminder of your accomplishments!

 

On May 27th, over 4,000 runners participated in the 2017 Buffalo Marathon and once again, our Run4Leah team members sported green CureNF t-shirts and volunteered at water stations, packet pickup and /or completed half or full marathons in honor of Leah. Your efforts and those of our supporting donors help spread awareness, and raise much needed research funding for Neurofibromatosis-Type 2 (NF2).  Your loyalty and persaverence over the last ten years has been remarkable and heartwarming to Leah and her family. It has even gained the attention of the NF2 community nationwide.  

 

We want to say "thank you" for your time, teamwork, and dedication to Run4Leah/CureNF, Leah and the extended Manth family over the past decade!  You helped us raise nearly $20,000 through this year's Buffalo Marathon participation - that's more than one third of our 2017 fundraising goal of $50,000.  

 

Together we can make a difference!

 

Check out some photos from this year's Buffalo Marathon

 

Leah & ten year Run4Leah team member Bev Walter

 

Desiree Doucette meets up with Leah after completing her first half marathon

 

Ten year Run4Leah team members Anne Patterson and Pat Dalton head for the finish line with Debbi Miller waving to the camera!

 

Leah thanks ten year team members Anne Patterson and Lisa Hoffman during Saturday's Expo

 

Mark Walk heads to the half marathon finish line with Leah Gath in close pursuit!

 

Leah shares her appreciation with the Oar Family at Saturday's Packet Pick-up 

 

 

 

Water Station #23, chaired by the Manth's extended family & friends hydrate runners for their 10th year !

 

North Tonawanda Lumberjack supporters cheering on Run4Leah team members

 

The early risers pose for a 6am pre-race photo! 

 

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