Ebensburg Family Hosts Community Day to Fund Rare Disease Research, Celebrate Daughter’s Milestone
FOR IMMEDIATE RELEASE
Media Contact Info:
Ana Rita Moreira
917-0655-8110
anarita@vatpasealliance.org
917-0655-8110
anarita@vatpasealliance.org
Image 1: Flyer of the Event; Image 2: Trinity wearing a v-ATPase Alliance Shirt: Care About Rare [Click images for larger view.]
EBENSBURG FAMILY HOSTS COMMUNITY DAY TO FUND RARE DISEASE RESEARCH, CELEBRATE DAUGHTER’S MILESTONE
EBENSBURG, PA, August 5, 2025 (PittsburghNewsWire.com) — The Ebensburg community is invited to a special “Community Day” event on Saturday, August 9th, at Hoss’s Steak & Sea House in Ebensburg, aimed at raising vital funds for the v-ATPase Alliance. Organized by local parents Kayla and Dylan McCall, whose daughter Trinity is affected by an ultra-rare v-ATPase genetic disorder. The event also celebrates Trinity’s starting kindergarten.
The v-ATPase Alliance provides crucial support and resources for families navigating this challenging condition, striving to advance treatments and find cures. “Without the v-ATPase Alliance, our family and many like ours would go without the support we need to make headway on treatments for the ultra-rare disorder our children are affected with, but also, we’d be alone in the struggles associated with this ultra-rare genetic disorder,” says Kayla McCall. “We have been truly blessed by this Alliance and the resources it strives to obtain for us all.”
The Community Day is a unique opportunity for the public to contribute to a critical cause while enjoying a meal. Hoss’s in Ebensburg has generously partnered with the McCall family, pledging to donate 20% of their profits from the day to the v-ATPase Alliance.
The McCalls are spearheading efforts to raise $1,000 at this event. These funds will directly support the collection of a biosample for Trinity, a crucial step in the Alliance’s broader #20for20 Campaign, which aims to collect 20 biosamples requiring $20,000 to significantly advance research into v-ATPase disorders.
“This Community Day is about more than just fundraising; it’s about bringing our community together to support a cause that impacts families directly here in Ebensburg,” adds Dylan McCall.
Community members wishing to support the event can obtain tickets from Dylan or Kayla McCall. Participants simply pay for their meal at Hoss’s, present the ticket, and the restaurant will ensure the donation is made.
Event Details:
What: Community Day Fundraiser for Trinity and all v-ATPase-related kids around the world.
When: Saturday, August 9th, 11am – 8:30pm
Where: Hoss’s Steak & Sea House: 4343 Admiral Peary Hwy, Ebensburg, PA 15931
How to Participate: Get a free ticket from Kayla or Dylan McCall, pay for your meal, and present the ticket at Hoss’s.
What: Community Day Fundraiser for Trinity and all v-ATPase-related kids around the world.
When: Saturday, August 9th, 11am – 8:30pm
Where: Hoss’s Steak & Sea House: 4343 Admiral Peary Hwy, Ebensburg, PA 15931
How to Participate: Get a free ticket from Kayla or Dylan McCall, pay for your meal, and present the ticket at Hoss’s.
“This will be our first restaurant fundraiser, and we are honored to be supporting the McCall family. We are so incredibly inspired by their story, their strength, and their will to turn their personal journey into a beacon of hope for our entire community. Their event is a powerful reminder that every family’s fight can be a catalyst for change,” said Ana Rita Moreira, one of the co-founders of the Alliance and a mom of an affected child as well.
About the McCall Family:
Kayla and Dylan McCall are the parents of Trinity, a 5 year old lovely girl with blue eyes who will steal your heart. She is sweet, charming, and also affected by an ultra-rare mutation in the gene ATP6V0c, a condition with no name, no expert, and no treatment available. Trinity is 1 of only 27 known ATP6V0c cases in the world, and her journey is a powerful testament to her strength and her family’s love.
Kayla and Dylan McCall are the parents of Trinity, a 5 year old lovely girl with blue eyes who will steal your heart. She is sweet, charming, and also affected by an ultra-rare mutation in the gene ATP6V0c, a condition with no name, no expert, and no treatment available. Trinity is 1 of only 27 known ATP6V0c cases in the world, and her journey is a powerful testament to her strength and her family’s love.
Her daily life includes managing intractable mixed-type epilepsy, a sensory processing disorder, and global developmental delays. Trinity graduates to kindergarten this year.
About Hoss’s Steak & Sea House:
Since its founding, Hoss’s has been dedicated to giving back to the communities it serves. With a generous and long-standing commitment to local causes, the company has donated over $6 million through its Community Fundraisers, a program designed to be a simple and effective way for organizations to raise money. Over the claim: Putting the “FUN” back into “FUNdraising”, the process is straightforward: groups invite their supporters to dine at Hoss’s on a designated day, and the restaurant donates a significant percentage of the total sales back to the organization. This model allows community groups to earn funds with no selling, no hassle, and all the support they need from the Hoss’s team. It’s an easy, well-managed, and impactful way for Hoss’s to help local causes thrive.
Since its founding, Hoss’s has been dedicated to giving back to the communities it serves. With a generous and long-standing commitment to local causes, the company has donated over $6 million through its Community Fundraisers, a program designed to be a simple and effective way for organizations to raise money. Over the claim: Putting the “FUN” back into “FUNdraising”, the process is straightforward: groups invite their supporters to dine at Hoss’s on a designated day, and the restaurant donates a significant percentage of the total sales back to the organization. This model allows community groups to earn funds with no selling, no hassle, and all the support they need from the Hoss’s team. It’s an easy, well-managed, and impactful way for Hoss’s to help local causes thrive.
About the v-ATPase Alliance:
The v-ATPase Alliance is dedicated to supporting families affected by ultra-rare v-ATPase genetic disorders, facilitating research, and advocating for treatments and cures.
The v-ATPase Alliance is dedicated to supporting families affected by ultra-rare v-ATPase genetic disorders, facilitating research, and advocating for treatments and cures.
The Alliance started in November 2023 with three parents who refused to accept the status quo. They transformed their personal journeys into a global mission to bring together families, researchers, and clinicians in the fight against these ultra-rare v-ATPase-related conditions.
Now, they have grown into a powerful global community of 79 families across +20 countries, with a growing network of researchers and partners. Together, they are turning shared hope into meaningful action, driving research forward one day at a time.
v-ATPase Alliance is a Registered 501(C)(3) Nonprofit organization, Tax ID Number – EIN: 93-4759423.
Media Contact: Ana Rita Moreira – 917 655 8110 – anarita@vatpasealliance.org
Website: www.vatpasealliance.org
Social Media:
Facebook Page: https://www.facebook.com/vatpasealliance
Instagram: https://www.instagram.com/vatpasealliance
Twitter: https://twitter.com/vatpasealliance
LinkedIN: https://www.linkedin.com/company/vatpasealliance/
Youtube: https://www.youtube.com/@vatpasealliance
BSky: https://bsky.app/profile/vatpasealliance.org
Linkbio: https://linkin.bio/vatpasealliance
Current fundraiser: #20for20: https://donorbox.org/20-for-20-786238
Local contact on the day of the event: Kayla McCall – 814 341 9696
###
