Hannah's Hope For GAN

10/14/2026

Many thanks to Dave Vanderzee, and the team at NPA Financial for selecting Hannah’s Hope Fund as a recipient charity of their annual golf event. The Vermont Agency Foundation awarded HHF an $8,500 donation, as Dave’s team came in second place! Thank you all for your generosity!

10/14/2026

Hannah's Hope Fund is happy to be given the opportunity to host an externally-led Patient Focused Drug Development (PFDD) meeting with the FDA on Nov. 6th, starting at 10:00am EST. The meeting will be remote, via Zoom, and will be recorded.

The Agency will hear directly from patients and their families about disease burden, priorities for treatments, and their experience with experimental treatments.

Please register at the link below if you wish to attend via Zoom on Nov. 6th.

Hear directly from the GAN community about disease burden, daily impact, treatment priorities, and what matters most to patients.

05/14/2026

Great news! On May 7th, the first patient in the world received a drug in their vagus nerve. The patient was a 22 yr old GAN patient, named Hannah, the inspiration of HHF! She’s doing wonderfully and will be discharged from the hospital tomorrow. This intervention aims to regenerate peripheral nerves involved in involuntary functions of the autonomic nervous system. It will likely be several months before we see any benefit.

HHF is working to get a dose escalation study off the ground for the first gene therapy it funded the development of that targets the motor neurons in the central nervous system (CNS). Additionally, we aim to begin injecting milder GAN patients this year. It has been a long haul, but we hope to have all rights back to the CNS program any day now.

Thank you all who have helped HHF on this mission since 2008!

(First photo below is of Hannah and neurosurgeon, Dr. Angela Price, the MD that performed this procedure.)

05/01/2026

Well… tomorrow is Curly Hair Day 💛

The day we usually rally everyone to rock their curls, raise awareness for Giant Axonal Neuropathy, and help fund the gene therapy that means everything to our kids.

But real life hit hard over here — hospital stays, sickness, and just trying to keep our heads above water while we wait on gene therapy… and honestly? We dropped the ball on the big lead-up this year. 🤦🏼‍♀️

So we’re calling in a last-minute favour — the kind this community always shows up for.

If you’ve got curls (or can fake ‘em 😉), wear your hair curly tomorrow.
Snap a pic.
Share it.
Tag .

And if you’re able, make a donation — because right now, with gene therapy in progress, every single bit truly matters more than ever.

Let’s not let our “oops” tank this day. Let’s make it count anyway.

Big, messy, beautiful curls for a really important cause 💛

Donate here:
https://hannahshopefund.org/

04/23/2026

Dear families.
This is the post I just now made on my personal page in case you don’t follow me. “Great news! Learned a short time ago that the internal review board has approved Hannah’s gene therapy injection. Now, we are waiting on the surgery date. Thankfully, we see changes coming in the near future to make single patient genetic medicines much easier to access. Genetic medicines need to be treated as ‘procedures’, like bone marrow transplants, not as ‘studies’. The culture must change within academic centers, realizing that genetic medicines are not for the next generation. They are for the patients waiting for them here and now. Working to encourage all parents developing genetic medicines for their children to demand immediate access as soon as their toxicology study is done, and the drug is in the freezer. The vast majority of genetic disorders are ultra rare. And, even within a disease indication there’s huge phenotypic variability. Therefore, there will be no statistical analysis plan submitted with these protocols. Rather, each patient’s lead-in data will be the control data. What we have been through to make this happen for Hannah should never happen again. The whole system needs to be overhauled. Academic centers receiving federal funding must be mandated and incentivized to execute on the administration of genetic medicines, especially when the drug is being provided at no cost. And, access should also be granted to pediatric patients for fatal indications, if the parents assent. While today was another milestone met, I don’t think I’m actually going to believe that it’s happening until Hannah is being wheeled into the operating room. 🙏. Please continue to pray for her. (In the photo below, hannah has on her physio vest.)”

03/11/2026

Another bump in the road…. Hannah was cleared by pulmonary. However, the principle investigator (MD) won’t clear her for the gene therapy surgery tomorrow and refused to consult with anesthesia. She feels hannah won’t have a good outcome and it would cause the study to be put on hold. Regardless, Hannah is currently having a sleep study and we are meeting with anesthesia tomorrow after they review the sleep data. If they agree with pulmonary that hannah can be supported inter-operatively and post-operatively, we are praying the MD will reconsider. (Hannah is the second GAN patient she has refused to enroll in the study.). For decades, rare disease parents have pleaded that their terminally ill children be given access to experimental drugs, just like children with cancer are given experimental chemotherapy. The FDA has made great strides, with Dr. Makary announcing last week that 100% of compassionate use applications that crossed his desk have been approved. We are still fighting the fight for Hannah and all children and adults living with GAN. Please keep praying. 🙏

03/08/2026

Hannah's Hope Fund is hosting an Externally-led Patient Focused Drug Discovery (PFDD) Meeting with the FDA on November 6th, 2026. The meeting will take place at the Bethesda North Marriott Hotel & Conf. Ctr, in Rockville, MD. The meeting will also be live-streamed. We encourage all GAN patients and families to participate. For more information about this meeting, please click on this link:

What is a Patient-Focused Drug Development (PFDD) meeting? Patient-Focused Drug Development (PFDD) is a systematic approach to help ensure that patients' experiences, perspectives, needs, and priorities are captured and meaningfully incorporated into drug development and evaluation. PFDD meetings fo...

02/06/2026

Last week, the amazing fans and families of BCS and PHS hockey held the 12th annual Hannah's Hope Fund (HHF) for GAN fundraiser. Generous volunteers and businesses donated their time and goods toward an expansive auction that raised $3,000! Special thanks to Justin Frechette and Reagan Tetreault for working so hard on this event every year. The second gene therapy HHF funded the development of targets the autonomic nervous system. The goal is to restore speech, swallowing and other involuntary functions. We learned this week that the first subject screened for inclusion was eliminated from Trial participation. Hannah Sames, the inspiration of HHF will be the first person in the world to receive a drug directly injected into the left vagus nerve, provided she passes screening this month. Please pray for Hannah and her peers. Eternally grateful, Lori Sames

01/29/2026

🖤🖤🖤

𝗧𝗢𝗡𝗜𝗚𝗛𝗧 𝗢𝗡 𝗣𝗦𝗡 𝗛𝗜𝗚𝗛 𝗦𝗖𝗛𝗢𝗢𝗟 𝗟𝗜𝗩𝗘 — 𝗦𝗘𝗖𝗧𝗜𝗢𝗡 𝗩𝗜𝗜 𝗕𝗢𝗬𝗦 𝗛𝗢𝗖𝗞𝗘𝗬

🏒 𝗧𝗛𝗘 𝗣𝗟𝗔𝗧𝗧𝗦𝗕𝗨𝗥𝗚𝗛 𝗛𝗢𝗥𝗡𝗘𝗧𝗦 and 𝗕𝗘𝗘𝗞𝗠𝗔𝗡𝗧𝗢𝗪𝗡 𝗘𝗔𝗚𝗟𝗘𝗦 face off in a special game supporting 𝗛𝗔𝗡𝗡𝗔𝗛’𝗦 𝗛𝗢𝗣𝗘 𝗙𝗨𝗡𝗗.

𝗔𝗡𝗗 𝗔 𝗦𝗣𝗘𝗖𝗜𝗔𝗟 𝗚𝗔𝗠𝗘 𝗡𝗘𝗘𝗗𝗦 𝗔 𝗦𝗣𝗘𝗖𝗜𝗔𝗟 𝗚𝗨𝗘𝗦𝗧
𝗝𝗢𝗜𝗡 𝗕𝗥𝗜𝗔𝗡 𝗪𝗔𝗧𝗧𝗦 & 𝗧𝗛𝗘 𝗡𝗘𝗪𝗘𝗦𝗧 𝗔𝗗𝗗𝗜𝗧𝗜𝗢𝗡 𝗧𝗢 𝗧𝗛𝗘 𝗣𝗦𝗡 𝗣𝗟𝗔𝗬-𝗕𝗬-𝗣𝗟𝗔𝗬 𝗧𝗘𝗔𝗠
(𝗧𝗥𝗨𝗦𝗧 𝗨𝗦 — 𝗬𝗢𝗨’𝗥𝗘 𝗚𝗢𝗜𝗡𝗚 𝗧𝗢 𝗪𝗔𝗡𝗧 𝗧𝗢 𝗧𝗨𝗡𝗘 𝗜𝗡!)

🕖 𝗣𝗨𝗖𝗞 𝗗𝗥𝗢𝗣: 7:45 PM
🎧 𝗟𝗜𝗦𝗧𝗘𝗡 𝗟𝗜𝗩𝗘: PotassiumSportsNetwork.com (Or Link in Comments)
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𝗣𝗢𝗧𝗔𝗦𝗦𝗜𝗨𝗠 𝗦𝗣𝗢𝗥𝗧𝗦 𝗡𝗘𝗧𝗪𝗢𝗥𝗞
𝗬𝗢𝗨𝗥 𝗛𝗢𝗠𝗘𝗧𝗢𝗪𝗡. 𝗬𝗢𝗨𝗥 𝗛𝗢𝗠𝗘 𝗧𝗘𝗔𝗠𝗦.
𝗜𝗧’𝗦 𝗡𝗢𝗧 𝗝𝗨𝗦𝗧 𝗖𝗢𝗩𝗘𝗥𝗔𝗚𝗘. 𝗜𝗧’𝗦 𝗙𝗢𝗥 𝗔 𝗖𝗔𝗨𝗦𝗘.

01/29/2026

If you’re in the area!!
Thank you for the support!

EAGLE FANS, tomorrow is the 12th annual Hannah's Hope, WHITE OUT game against PHS!

Come early! Wear WHITE (first 100 BCS or PHS students will receive a free EAGLES hockey T-Shirt)! Bring your generosity! Gift Baskets, raffles, Lottery ticket trees and of course, HOCKEY await!

Thursday Jan. 29th 2026
Ronald B. Stafford Ice Arena
Puck Drop 7:45 pm

Let's GO EAGLES!