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fundraising campaign

Our Mission: $20,000 for 20 Life-Changing Biosamples

Imagine finding answers, unlocking treatments, and finally seeing hope turn into action for children facing a devastating rare genetic disorder. This is our urgent mission at the v-ATPase Alliance, and today, we're launching our '20 for 20' Campaign to make it a reality.

We are aiming to raise $20,000 to collect 20 vital biosamples from children affected by v-ATPase-related conditions worldwide. Each sample, costing approximately $1,000 to collect, process, and store, represents a crucial piece of the puzzle in our quest for a cure.

Your Action Fuels Our Progress!

Every donation, big or small, gets us one step closer to filling this grid and completing our initial biosample collection. Your support directly contributes to unlocking the biological insights needed for understanding disease mechanisms, identifying therapeutic targets, and ultimately, developing treatments.

Help us fund this initiative and move us closer to a cure!

Click in the DONATE button today and be a part of this pivotal campaign!

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Why These 20 Biosamples are so important to a Cure?

v-ATPase-related disorders are ultra-rare genetic conditions that impact a fundamental "pump" in nearly every cell of the body. These conditions often lead to severe challenges, including Developmental and Epileptic Encephalopathies (DEEs).

While we gather essential patient data, biosamples are the direct biological material researchers desperately need. They are our "physical keys" to understanding how and why these conditions manifest at a molecular level. Each sample allows scientists to:

Identify Biomarkers: Discover unique biological clues for earlier diagnosis, tracking disease progression, and measuring treatment effectiveness.
Develop Patient-Specific Disease Models: Create vital "living laboratories" (like iPSC cell lines) that mimic the disease, enabling safe testing of potential drug candidates.
Accelerate Treatment Development: Provide world-leading scientists with the irreplaceable resources needed to fast-track targeted therapies.

Without these 20 precious biosamples, critical breakthroughs remain out of reach.

Your $1,000 Donation Funds a Full Sample. Any Amount Fuels Our Progress!

$1,000 fully funds one biosample, unlocking a wealth of insights.
$500 covers half the cost, bringing us significantly closer.
Every single dollar directly contributes to the collection, processing, and secure storage of these irreplaceable samples.

The samples collected will be securely stored and meticulously cataloged within the COMBINEDBrain Biorepository. This ensures they are preserved under optimal conditions and made globally accessible to qualified researchers, fostering worldwide collaboration.

Join the '20 for 20' Movement: Be a Catalyst for a Cure!

Your generosity isn't just a donation; it's a direct investment in the lives of children affected by v-ATPase disorders. It's a commitment to hope, a belief in science, and a tangible step towards a future where treatments and cures are a reality.

Please donate today. Share this campaign with your friends, family, and network. Together, we will be transforming scientific potential into life-changing realities.

run out of ideas? Reach out to us

Have ideas to share?

We're not just an Alliance of gene-related disorders, but also of disruptive ideas, positive energy, creativity, and compassion.

Our collective thinking makes us better.

So, if you have suggestions, feedback, or new ideas, reach out to us.

We would love to connect with you!

We welcome all hands and hearts!

If you want to get involved alongside us, reach out and let us know your availability and talent. We need help with legal, social media, design, fundraising, grant writing and more. It can be a one-time thing or something recurring.

Our team is awesome and easy to work with!

Share the Mission with Friends and Family

Send an email to 20+ friends and family members spreading our word, our mission and feel free to use the template below or personalize your message.

Help us advocate and raise awareness

Follow up and Share our content across all social media.

Our handle is always @vatpasealliance across all platforms – Facebook, Instagram, LinkedIn, X (Twitter), Threads.

You can build on the post suggestion bellow, together with some unique graphics!

Email sample to share with friends and family

Join v-ATPase Alliance in Changing Lives

Hi Friends,

My family/My good friend is affected by v-ATPase Rare Genetic Syndrome. This is an ultra-rare genetic disorder and there isn’t much information available. Even after receiving a diagnosis, families still don’t know what to expect, how to manage it, and what the best care plan should be.

It would mean so much to me if you would support this Alliance. They are the only organization in the world aiming to unite families, advance scientific research to know more about these conditions and enable the development of effective treatments for v-ATPase children. They are just starting, but you can see their dedication and how much they have already achieved on their own. Their effort can be multiplied if we help grow their reach, spread their mission and vision, and contribute to help achieve their goals, which are our goals.

So, just like I am doing, please forward this email to your contacts, learn about this organization and, if you can, support their cause. All information can be found at www.vatpasealliance.org

You can also check out their social media at:

Facebook: https://www.facebook.com/vatpasealliance

Instagram: https://www.instagram.com/vatpasealliance

X (former Twitter): https://twitter.com/vatpasealliance

LinkedIN: https://www.linkedin.com/company/vatpasealliance/

Thank you for your support!

Best,

Your Name

Easy Share

1) Copy-Paste to your email.

2) Add Contacts.

3) Send!

We appreciate you!

Email Now

Social media share suggestion

My family/My friend is affected by v-ATPase Rare Genetic Syndrome.

This is an ultra-rare genetic disorder and there isn’t much information available. Even after receiving a diagnosis, families still don’t know what to expect, how to manage it, and what the best care plan should be.

Will you please “like” and share this post with your networks, learn more about this organization, and support their cause if you’re able?

Please also follow their Page at www.Facebook.com/vatpasealliance and their Instagram at https://www.instagram.com/vatpasealliance Even more information can be found at www.vatpasealliance.org.

Thank you for caring about the children and families impacted by this ultra-rare disease!

#vATPase

#CareAboutRare

#RareDiseaseAwareness

#nonprofit

#2024yearofAction

#ATP6V1A

#ATP6V0C

#ATP6V0A1

#ATP6AP2

Easy Share

1) Copy-Paste to Facebook, LinkedIn or Instagram.

2) Add graphics/images to use along with the publication in the link bellow.

3) Post and Share!

We appreciate you!

Graphics

2025 is the #YearOfAction. Get involved!

2025 is the #YearOfAction. Get involved!

2025 is the #YearOfAction. Get involved!

2025 is the #YearOfAction. Get involved!

2025 is the #YearOfAction. Get involved!

2025 is the #YearOfAction. Get involved!

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