Posted at 04:32 PM | Permalink | Comments (0)
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.
Posted at 12:41 PM | Permalink | Comments (0)
Help us reach our fundraising goal of $30,000 for NF2 research and awareness.
You can participate:
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.
Posted at 08:29 PM | Permalink | Comments (0)
Dear Run4Leah/CureNF Runners, Volunteers & Donors:
Posted at 12:17 PM | Permalink | Comments (0)
If you have already donated, thank you so much for your generosity in making Run4Leah/Cure NF a success!
Posted at 07:44 PM | Permalink | Comments (0)
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!
Posted at 06:54 PM | Permalink | Comments (0)
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!
Posted at 12:14 AM | Permalink | Comments (0)
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
Posted at 01:23 PM | Permalink | Comments (0)
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.
Posted at 07:56 AM | Permalink | Comments (0)
Post-Op Update #1
Today, April 26, Leahβ had her 13th 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.
Posted at 10:15 PM | Permalink | Comments (0)