Leena Panwala
Leena Panwala's Fundraiser

SUPPORT ARIYA'S WISH

TOGETHER WE WILL BEAT INAD!

$148,663 towards $200,000

Ariya's Wish

What’s the earliest wish you remember making?
Did you make it while blowing out candles on your birthday cake,
plucking a four-leaf clover, or tossing a coin into a fountain?

Ariya is unable to do any of these and needs *your* help to make her wishes come true! What is she wishing for?

Ariya’s wishlist:

  1. To be able to hug my Mommy & Daddy
  2. To be able to tell my little sis “I love you”
  3. To be able to eat a slice of pizza!
  4. To be able to dance with my cousins
  5. To have enough friends to support me & donate to research so I can get better!

It’s that last wish that will help make all her others come true, and that’s where YOU come in! Ariya has an ultra-rare (roughly 200 cases globally) inherited degenerative disorder of the nervous system, Infantile Neuroaxonal Dystrophy, otherwise known as INAD.


Quick facts about INAD:

  1. Children are born “normal” and hit all of their earlier milestones
  2. Once symptoms start to appear, around 6-18 months, children with INAD begin to lose all acquired skills
  3. INAD takes away a child’s ability to walk, talk, sit unassisted, hold their own head up, and even chew their food
  4. INAD is comparable to a combo of Parkinson’s & Alzheimer’s – for little kids
  5. Most children afflicted by INAD do not live beyond age 10, but some do survive into their teens or later ages

Currently, there is no cure for INAD and, because it’s such a rare disease, there has been little funding for research.

There is HOPE though!

With your support and the current advances in research, a cure for this devastating disease is on the horizon!

INADcure Foundation - Fighting Infantile Neuroaxonal Dystrophy

At the end of 2016, Ariya’s parents and other families impacted by INAD came together to form the INADcure Foundation (www.inadcure.org) and begin raising funds for the critical research that will find a cure for INAD.

Research is complex, time-consuming, and expensive. Working tirelessly with the top scientists on the most promising research paths for INAD has allowed us to get a few steps closer to curing this devastating disease one day. We won’t stop until we accomplish this goal!

So far, as the only U.S. based nonprofit dedicated exclusively to the INAD community, we've been able to fund over $700,000 in critical INAD-specific research, including:

  • establishing a biobank of research-ready cell lines,
  • a natural history study,
  • gene editing,
  • cell therapy,
  • gene therapy,
  • and other pre-clinical research.

There has been great progress, but we still have more work to find that cure!

Please help Ariya’s wishes come true and donate today.
Even a small donation will go a long way toward helping the INADcure Foundation find a cure!
Together We Will Beat INAD!

Ariya's Wish @AriyasWish ......... Ariya's Wish Ariya's Wish

Press:

New York Stem Cell Foundation News Update, Winter 2019
https://nyscf.org/resources/for-a-family-affected-by-rare-disease-stem-cells-are-providing-new-hope/

Video: New York Stem Cell Foundation 2020 Virtual Gala & Science Fair
The Panwala Family: The Affects of Rare Diseases
https://www.youtube.com/watch?v=Wk0WtaYC374&t=1474s

Video: New York Stem Cell Foundation News: Parents Lead the Push for Rare Disease Cures
Unlocking Rare Disease Treatments with Stem Cells
https://nyscf.org/resources/parents-lead-the-push-for-rare-disease-cures/

Chan Zuckerberg Initiative Awards $13.5 Million to Drive Progress Against Rare Diseases
https://chanzuckerberg.com/newsroom/chan-zuckerberg-initiative-awards-13-5-million-to-drive-progress-against-rare-diseases/

Collaboration will open more doors and increase awareness
https://chanzuckerberg.com/rao/inadcure-foundation/