Run4Leah-CureNF

Team Leah & NF2 Need YOU!

TOGETHER WE CAN MAKE A DIFFERENCE

 

 

Calling All Alumni & Newbie Volunteers, Runners & Donors:

 

If a half or full marathon is not in the cards for you, it's time to shake the dust off of your green CureNF t-shirt and walk, jog or run with Team Leah in the John Beishline Memorial 5K at the Buffalo Marathon on Saturday, May 26th at 8:30 a.m. 

 

Help us raise awareness for Neurofibromatosis and funding for critical research.  It's not too late...6 weeks and counting.

 

Here is the link to register for the 5K Race:

 

https://www.buffalomarathon.com/page-5k/

 

Note that the current registration rate of $30 will increase on May 1st to $35.

 

Be sure to also email our Team Leah coordinator, Anne Patterson, at run4leah@gmail.com if you plan on participating and we will add your name to Leah's Firstgiving FUNdraising page!  

 

Please help us reach our goal of 50 walkers/runners and $30,000!

 

We will have a NF2 cheering section and are looking forward to raising much needed awareness and research funds for Leah and others with Neurofibromatosis-Type 2. 

 

If you are unable to participate, kindly consider making a tax deductible donation at the following link:

https://www.firstgiving.com/fundraiser/run4leah/2018

 

Together we make a difference in the fight against NF!

 

Advocating on the Hill for NF2

It was another successful trip to Capitol Hill for patient advocates representing CureNF and the NF Network.  Leah and her mom, Linda Manth, made the journey together with sister, Erin Manth and additional relatives Anne Patterson and Jenny Sawyer.  The group representing New York and Georgia joined up with numerous advocates representing Neurofibromatosis patients and families from across the United States as part of the NF Network's annual visit to Washington, D.C.  They spent two days meeting with Congressmen and women as well as their staffers, to build awareness about Americans challenged with Neurofibromatosis and formally request continued federal funding for Neurofibromatosis research and treatment options including promising new drug trials.

 

J. Sawyer, L. Manth, L. Manth & A. Patterson

 

A. Patterson & J. Sawyer await their meeting w/ Senator Gillibrand

 

J. Sawyer, L. Manth, L. Manth, M. Shaw, E. Manth and A. Patterson enjoy some sightseeing in DC

 

We Want You on our 2018 Run4Leah Team!

 

Just eleven weeks until our leading fundraiser - The Buffalo Marathon:  Sunday, May 27th!

Help us reach our fundraising goal of $30,000 for NF2 research and awareness.

You can participate:

• as a racer - choose the 5K on Saturday May 26th, or the full marathon or half-marathon on Sunday, May 27th
• volunteer on either race day
• be a donor and/or sponsor a racer
• raise funds by soliciting donations from friends, family, colleagues and local businesses

Be a  part of our Memorial Day weekend tradition of raising awareness and funds for Neurofibromatosis Type 2 (NF2)

 

To Join our Run4Leah Team @ the Buffalo Marathon:

Step 1)  Contact our Run4Leah Team Coordinator:

Anne Patterson
run4leah@gmail.com
716-655-3630

Step 2)  Register for the Race (you need to do this directly yourself)

https://www.buffalomarathon.com/newregistration/

Step 3) Start Training!

Help our racers reach their suggested fundraising goals:  $1000 for Relay Teams and $250 for individual racers!

Secure on-line donations can be made here:
http://www.firstgiving.com/fundraiser/run4leah/2018

For mail in donations:

Make checks payable to "NF Inc., Northeast" Note "Manth/Run4Leah" in the memo line.   Please mail checks to David Manth, 2922 Walck Drive, North Tonawanda, NY 14120. 

Donations can also be turned in at our Run4Leah/Cure NF Booth during the Buffalo Marathon Expo (at the Convention Center) on Saturday and Sunday!

All donations are tax-deductible and will receive a 501(c)(3) receipt from NF Northeast, Inc.

 

Help us reach our fundraising goal of $30,000 for NF2 research and awareness.

You can participate:

• as a racer - choose the 5K on Saturday May 26th, or the full marathon or half-marathon on Sunday, May 27th
• volunteer on either race day
• be a donor and/or sponsor a racer
• raise funds by soliciting donations from friends, family, colleagues and local businesses

Be a  part of our Memorial Day weekend tradition of raising awareness and funds for Neurofibromatosis Type 2 (NF2)

 

To Join our Run4Leah Team @ the Buffalo Marathon:

Step 1)  Contact our Run4Leah Team Coordinator:

Anne Patterson
run4leah@gmail.com
716-655-3630

Step 2)  Register for the Race (you need to do this directly yourself)

https://www.buffalomarathon.com/newregistration/

Step 3) Start Training!

Help our racers reach their suggested fundraising goals:  $1000 for Relay Teams and $250 for individual racers!

Secure on-line donations can be made here:
http://www.firstgiving.com/fundraiser/run4leah/2018

For mail in donations:

Make checks payable to "NF Inc., Northeast" Note "Manth/Run4Leah" in the memo line.   Please mail checks to David Manth, 2922 Walck Drive, North Tonawanda, NY 14120. 

Donations can also be turned in at our Run4Leah/Cure NF Booth during the Buffalo Marathon Expo (at the Convention Center) on Saturday and Sunday!

All donations are tax-deductible and will receive a 501(c)(3) receipt from NF Northeast, Inc.

 

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.