Dear Potential Sponsor,
We would love to invite you to help our mission of helping to find out children treatments and a cure for ADNP syndrome by becoming a Sponsor for our "3rd" annual Virtual Warrior Fun Run to be held September 24, 2022.
Established in 2016, the ADNP Kids Research Foundation is an accredited non-profit 501(c)(3) charity. We are a 100% volunteer organization run by families of children who suffer from this rare neurological genetic disorder, ADNP syndrome.
Charity organizations like ours NEED HELP from Sponsors like yourself because there are only 400 children diagnosed in the entire world. Because it affects such a small patient population, there is just no interest in industry or governmental funding. But we cannot wait, because TIME IS BRAIN! Each day that passes, our children suffer and loose the opportunity for their brains to develop correctly and the clock is ticking - we need to find treatments for our children as fast as possible!
To date, we are the worlds largest contributor of ADNP research in the world, sponsoring more than $1.5 million dollars directly into research! But we need millions more, and we cannot find treatments and a cure without the generous support from sponsors and donors.
We are laser-focused on advocacy, education and most of all, funding research initiatives that result in scientific and advancements, including but not limited to:
Your generous contribution will help us fund research, create programs, advocate and move toward accelerated therapeutic solutions and a cure for ADNP Syndrome.
We invite you to join us as a sponsor for this event by choosing from one of our Sponsorship Packages.
To become a sponsor:
Email [email protected].
Make checks payable to:
ADNP Kids Research Foundation
Tax ID#: 30-0964243
24500 NW 132nd Circle
Brush Prairie, WA 98606
We would love to invite you to help our mission of helping to find out children treatments and a cure for ADNP syndrome by becoming a Sponsor for our "3rd" annual Virtual Warrior Fun Run to be held September 24, 2022.
Established in 2016, the ADNP Kids Research Foundation is an accredited non-profit 501(c)(3) charity. We are a 100% volunteer organization run by families of children who suffer from this rare neurological genetic disorder, ADNP syndrome.
Charity organizations like ours NEED HELP from Sponsors like yourself because there are only 400 children diagnosed in the entire world. Because it affects such a small patient population, there is just no interest in industry or governmental funding. But we cannot wait, because TIME IS BRAIN! Each day that passes, our children suffer and loose the opportunity for their brains to develop correctly and the clock is ticking - we need to find treatments for our children as fast as possible!
To date, we are the worlds largest contributor of ADNP research in the world, sponsoring more than $1.5 million dollars directly into research! But we need millions more, and we cannot find treatments and a cure without the generous support from sponsors and donors.
We are laser-focused on advocacy, education and most of all, funding research initiatives that result in scientific and advancements, including but not limited to:
- the ADNP Ketamine FDA drug trial: the Foundation funded phase 2A which demonstrate safety, tolerability, and efficacy of low-dose ketamine, and now, the Foundation will fund the next phase of the trial that is currently in the design approval process with the FDA,
- a high-throughput screening project that will run thousands of FDA-approved drugs using ADNP neuronal cell lines and via Artificial Intelligence, look for connected therapeutic small molecules,
- a multi-lab curative gene therapy program working to address disease specific management, eradication, or reversal of the effects of this devastating complex neurological genetic disorder,
- the creation of our “ADNP Assets”, which includes a patient registry, natural history study, biorepository, IPS cell lines, and ADNP animal models that will be readily available to use in testing new or existing drugs and treatments. "ADNP Assets" will reduce barriers typical to rare disease research by improving access to specimens and data for researchers, pharmaceutical and biotech companies to advance science that benefits our children.
Your generous contribution will help us fund research, create programs, advocate and move toward accelerated therapeutic solutions and a cure for ADNP Syndrome.
We invite you to join us as a sponsor for this event by choosing from one of our Sponsorship Packages.
To become a sponsor:
Email [email protected].
Make checks payable to:
ADNP Kids Research Foundation
Tax ID#: 30-0964243
24500 NW 132nd Circle
Brush Prairie, WA 98606
SPONSORSHIP PACKAGES
|
Platinum Package: $10,000
Gold Package: $5,000
Silver Package: $1,000
|
Bronze package: $500
Event Pricing for Participation Adults 18 and older: $25 Children 17 and younger: $10 Deadlines Deadlines for sponsorship application submissions: August 15, 2022 Deadlines for sponsorship application payment: August 24, 2022 Important Dates Event Date: September 24, 2022 Time: ALL DAY (24-hours) VIRTUAL event Location: Virtual Guidelines: Please follow your local city, state and or country's COVID guidelines Social Media Connect with other racers and families using #adnpfunrun |
WHAT IS ADNP SYNDROME
ADNP Syndrome (also known as Helsmoortel-VanDerAa Syndrome / HVDAS) is an extremely rare neurodevelopmental and autism genetic brain disorder caused by a mutation or deletion in the ADNP (Activity Dependent Neuroprotective Protein) gene.
The ADNP (activity dependent neuroprotective protein) gene is a crucial brain gene that is highly expressed. It affects brain formation, connectivity and development, as well as brain function and acts as protein-protecting nerve cells against electrical blockade (ie. protection against inability of nerve cells to communicate electrically). It codes for ADNP, a ubiquitously expressed protein involved in chromatin remodeling and synaptic function. Studies have identified ADNP as a regulator of axonal transport, dendritic spine plasticity and autophagy. The ADNP gene also affects many other organs and functions of the body.
Recent studies have placed the ADNP gene as a top single gene genetic cause of autism spectrum disorder (ASD) and accounts for approximately 0.2% of all cases of ASD. It is also the only known protein significantly decreasing in the serum of Alzheimer's disease (AD). ADNP Syndrome can cause a multitude of problems with the neurological, cardiovascular, endocrine, immune, musculoskeletal and gastrointestinal systems, as well as vision, hearing, growth, feeding and sleep. Developmentally, it can cause mild to severe delays in intelligence, speech and global motor planning, (including gross motor, fine motor and oral motor). It causes behavior disorders such as Autism Spectrum Disorder (ASD) in a substantial proportion of cases. In fact, it is estimated: ADNP to be mutated in at least 0.17% of genetic autism cases, making it one of the most frequent ASD-associated genes known to date.
Visit WHAT IS ADNP to learn more!
The ADNP (activity dependent neuroprotective protein) gene is a crucial brain gene that is highly expressed. It affects brain formation, connectivity and development, as well as brain function and acts as protein-protecting nerve cells against electrical blockade (ie. protection against inability of nerve cells to communicate electrically). It codes for ADNP, a ubiquitously expressed protein involved in chromatin remodeling and synaptic function. Studies have identified ADNP as a regulator of axonal transport, dendritic spine plasticity and autophagy. The ADNP gene also affects many other organs and functions of the body.
Recent studies have placed the ADNP gene as a top single gene genetic cause of autism spectrum disorder (ASD) and accounts for approximately 0.2% of all cases of ASD. It is also the only known protein significantly decreasing in the serum of Alzheimer's disease (AD). ADNP Syndrome can cause a multitude of problems with the neurological, cardiovascular, endocrine, immune, musculoskeletal and gastrointestinal systems, as well as vision, hearing, growth, feeding and sleep. Developmentally, it can cause mild to severe delays in intelligence, speech and global motor planning, (including gross motor, fine motor and oral motor). It causes behavior disorders such as Autism Spectrum Disorder (ASD) in a substantial proportion of cases. In fact, it is estimated: ADNP to be mutated in at least 0.17% of genetic autism cases, making it one of the most frequent ASD-associated genes known to date.
Visit WHAT IS ADNP to learn more!
