Sebastian Velona Foundation

Follow Message Edit

Sebastian Velona Foundation raises funds for research and treatment in the hope of stopping the progression of, and finding a cure for, Batten Disease CLN8.

ICO

863332681

Facebook

4072

Web

Sign in to see organisation website

Address

Newhall

Address: 24320 Main St, NewhallWeb: Sign in to see organisation websiteFacebook: healinghugs4sebiICO: 863332681

Donate to Sebastian's Healing Hugs Upcoming Events SebastiansHealing Hugs We need to raise over 3. 5 million dollars for researchand gene therapy for Batten Disease CLN8. HealingHugs Our campaign to raise money for Batten CLN8 research and therapy is called Healing Hugs. About Sebastians Healing Hugs Ever since Sebastian was a toddler he truly believed he could heal people with his hugs.

News & Updates XX

From Social media

News about from their social media (Facebook and X).

Laura

- What are some innovative ways we can raise awareness about Batten Disease CLN8 and the importance of funding research, particularly among younger audiences?

Like Comment
Marcella

What an inspiring mission! Every dollar counts towards making a difference in the lives of those affected by Batten CLN8. Keep up the amazing work, Sebastian Velona Foundation! 🙌❤️ #StopBattenDisease

Like Comment
Robin

- How can we effectively engage the community to support the Healing Hugs campaign for Batten Disease CLN8, and what strategies have proven successful for other NGOs in similar situations?

Like Comment
Joanna

Every hug from Sebastian is a reminder of the hope we share in this fight against Batten Disease. Let's all come together to support his incredible journey! 💙✨ #HealingHugs

Like Comment
Collected information

Data about organisation

Specifically Named Diseases Research Category

Organisations with similar rank to Sebastian Velona Foundation in category Specifically Named Diseases Research

47. Neurofibromatosis Midwest

Neurofibromatosis (NF) is a genetic disorder of the nervous system which causes tumors to form on th.

48. JOUBERT SYNDROME & RELATED DISORDERS FOUNDATION

The Joubert Syndrome & Related Disorders Foundation plays an important role in educating physicians a.

49. Sebastian Velona Foundation

Sebastian Velona Foundation raises funds for research and treatment in the hope of stopping the progression of, and finding a cure for, Batten Disease CLN8.

51. The Snow Foundation

Raising awareness and funding for Wolfram Syndrome research, an ultra rare disease.

More from Specifically Named Diseases Research

Newhall

Organisations from Sebastian Velona Foundation

More from Newhall

Similar organisations

Similar organisations to Sebastian Velona Foundation based on mission, location, activites.

Coalition Duchenne

Our mission is to raise global awareness for Duchenne muscular dystrophy, to fund research and find a cure.

A Foundation Building Strength Inc

Our mission is to find treatments for Nemaline Myopathy.

GRACE SCIENCE FOUNDATION

We are changing how scientific research is done by working to find a cure for NGLY1 Deficiency.

The Guthy-Jackson Research Foundation, Inc.

Through research & collaboration, we make medical breakthroughs for those with NMO.

More Similar Organisations

Similar Organisations Worldwide

Organisations in the world similar to Sebastian Velona Foundation.

HEALING WITH SMILES-KEEPSMILING ALLIANCE (ca)

Welcome to the Healing with Smiles - KeepSmiling Alliance.

hugs childrens cancer charity (uk)

Supporting families affected with childhood cancer through Respite, well being events and peer to peer support.

More Similar Organisations Worldwide

Interesting nearby

Interesting organisations close by to residence of Sebastian Velona Foundation

The Guthy-Jackson Research Foundation, Inc.

Through research & collaboration, we make medical breakthroughs for those with NMO.

Solve ME/CFS Initiative, Inc.

Our Mission: Make ME/CFS, Long Covid and other post-infection diseases widely understood, diagnosable, and treatable.

Cure Szt2

Cure SZT2 is a non-profit organization dedicated to families affected by the genetic mutation SZT2.

More Interesting nearby

Similar social media (4072)

Organisations with similar social media impact to Sebastian Velona Foundation

89898. Bhcare Foundation Inc

BHcare is a Certified Community Behavioral Health Clinic (#CCBHC) providing an integrated system of care for individuals and families struggling with mental health, substance use and domestic violence.

89899. BHcare

BHcare is a Certified Community Behavioral Health Clinic (#CCBHC) providing an integrated system of care for individuals and families struggling with mental health, substance use and domestic violence.

89900. Sebastian Velona Foundation

Sebastian Velona Foundation raises funds for research and treatment in the hope of stopping the progression of, and finding a cure for, Batten Disease CLN8.

89901. North Florida Bicycle Club Inc

The North Florida Bicycle Club was founded to encourage all people to participate in bicycling–a fun .

89902. Edgewater Development Corporation

Supporting, promoting, and connecting the Edgewater business community, since 1984.

Similar social media
Join us

Join us and make a difference for the future!

I work in a nonprofit and listing our organization on Eduo.org helped us reach new audiences and even new volunteers. It’s easy to use and feels built with love.

Brooklyn Simmons
Brian

I stumbled on Eduo by accident and ended up spending hours learning about different charities across the world. It’s like a global map of goodness

Brooklyn Simmons
Brian

As a teacher, I use Eduo in class to show students how civic engagement works. It’s inspiring and educational. Highly recommend for schools and community groups.

Brooklyn Simmons
Eve

As a teacher, I use Eduo in class to show students how civic engagement works. It’s inspiring and educational. Highly recommend for schools and community groups.

Brooklyn Simmons
Daniel

I stumbled on Eduo by accident and ended up spending hours learning about different charities across the world. It’s like a global map of goodness

Brooklyn Simmons
Eve

Finally, a clear and organized way to explore local and global charities.

Brooklyn Simmons
Catherine
Sign Up

Please fill in your information. Everything is free, we might contact you with updates (but cancel any time!)

Sign in with Google
Or
Collected information

Good News

Sylvie 2025-10-28

'A rising tide lifts all boats': Inside the ECB's push to elevate women's cricket

The Drum

Like Comment
Veronika 2025-10-28

How Gut Microbes Drive Cancer Risk - And What You Can Do to Restore Balance

Zero Hedge

Like Comment
Lenna 2025-10-28

"Exciting times for retail! 🌟 As we embrace a future that prioritizes human connection, it’s inspiring to see brands focusing on creating memorable experiences for shoppers. Let's keep pushing for soul in every interaction! #RetailWithSoul #PositiveChange #Eduo"

Why does the future of retail need more soul?

The Drum

Like Comment