“We must accept finite disappointment, but never lose infinite hope." Martin Luther King, Jr.
ASH1L disorder is rare but hopes must be limitless
Care4ASH1L is a parent-led support group for families and patient advocates of ASH1L.
What is Care4ASH1L?
Care4ASH1L was started in 2020 with the hope of bringing ASH1L families together and take initiatives to advance researches on ASH1L disorder.
Why did we start?
We approach researchers in the hope that they will expand research on ASH1L disorders and look deeper for associated challenges.
What do we do?
Connect ASH1L Families & Patient Advocates
The number of families diagnosed with ASH1L disorder is minimal and therefore it is very important to stay together. The information on ASH1L in the internet is scattered and the lack of adequate information can overwhelm the families. The purpose of the website is to create awareness about ASH1L disorder and to let the families know about the existence of other ASH1L families. The private facebook group has been created to facilitate the pathway of connecting with each other securely.
Approach Researchers to advance ASH1L studies
Currently, there are very few studies or trials solely dedicated to understand ASH1L disorder deeper. ASH1L disorder is rare but it has been evidently associated with Autism Spectrum Disorders, Intellectual Disability and many other neurodevelopmental disorders as well as various types of cancers and muscular dystrophy.
Care4ASH1L intends to change this scarcity of studies. We intend to approach any interested researcher/scientist who is willing to investigate further into ASH1L associated challenges and look into possibilities of cure that can help ameliorate the lives of ASH1L patients and their advocates or families.
Encourage families to participate in ASH1L research
The limited and scattered data about ASH1L related studies and theories can overwhelm and dishearten families facing the challenges in their day-to-day lives. The motive of Care4ASH1L is to present all the ongoing researches, trials and studies under one roof to ease the search and accessibility for ASH1L families.
Help raise funds to support ASH1L research
To engage with scientists & researchers and help increase research as well as awareness on ASH1L. To help raise funds for continuation of exploring the ASH1L gene.
To encourage development of novel therapeutic strategies for neurodevelopmental and neuropsychiatric disorders, cancers and other conditions associated with ASH1L.
To help researchers & scientists identify drugs, develop orphan drugs, Gene Therapy, ASO or Drug Repurposing using animal and human models.
To encourage researchers & scientists to investigate the gene’s biological function and the long-term goal of identifying suitable drug targets for therapeutic intervention
Care4ASH1L is dedicated tp encourage and promote advancements in ASH1L research. It is necessary to raise funds for the researchers and scientists to not only establish and maintain laboratories but also to -
Create animal and human models
To test therapeutic drugs efficacy
To explore various therapeutic strategies like gene therapies, Crispr9, ASH1L inhibitors, histone modifying drugs, etc.
To study Histone Methylation deeper and interpret the markers associated with ASH1L
To understand the overall ASH1L gene functionality
To understand how ASH1L mutation affects and influences other genes
To help explore the association of ASH1L mutation with several neurological disorders, cancers and muscular dystrophy.