Awareness Days
Awareness days are powerful opportunities to share information with the world about ASXL-related disorders. Use the resources below to help raise awareness and funds for Bohring-Opitz Syndrome, Shashi-Pena Syndrome, and Bainbridge-Ropers Syndrome.
Bainbridge-Ropers Syndrome Awareness Day - February 5
Bohring-Opitz Syndrome Awareness Day - April 6
Shashi-Pena Syndrome Awareness Day - October 6
Rare Disease Day - February 28
How to make the most of your awareness day
Host a fundraiser for research
Families living with ASXL syndromes have few answers. Help us change that by supporting research.
You can host a fundraiser on Facebook with just a few clicks or get creative!
Host a party, a lemonade stand, or whatever suits your interests to rally your community around supporting ASXL syndrome research.
Contact Amanda Johnson at amanda@arrefoundation.org if you’re interested in hosting a fundraiser and need help! We can even create a custom Facebook banner for your fundraiser featuring your loved one’s picture.
Make a donation
Make a donation to the ARRE Foundation on your awareness day. It’s a great day to start a recurring gift and join our Sustainers Circle.
Share your personal experience
Connect with the people in your network and tell them how you and your family are impacted by your ASXL syndrome. Share your experience and include pictures or video.
Get loud on social media
Create a custom profile picture (see below for links to each syndrome’s custom profile pictures) and post on social media! Use your syndrome’s hashtags and tag us @arrefoundation. We’ll repost you!
Bohring-Opitz Syndrome Awareness Day
April 6
Bohring-Opitz Syndrome facts
Bohring-Opitz Syndrome is a neurodevelopmental disorder.
Bohring-Opitz Syndrome is caused by a change, commonly called a mutation, on the ASXL1 gene. This change is typically random and happens shortly after conception.
There are an estimated 150-200 people diagnosed with Bohring-Opitz Syndrome globally.
Bohring-Opitz Syndrome is in a subcategory of rare disorders called “ultra rare.”
The features and abilities of people with Bohring-Opitz Syndrome varies greatly. We do not yet know why there is a broad spectrum of features and abilities.
Some of the most common features of Bohring-Opitz Syndrome include developmental delay, intellectual disability, low muscle tone, feeding difficulties, constipation, seizures, sleep difficulties, and flexed joints.
Bohring-Opitz Syndrome Awareness Day is on April 6 in recognition of the date the Bohring-Opitz Syndrome family support group on Facebook was created.
Find more information on the Bohring-Opitz Syndrome page.
Shareable resources
Social media profile frames
Pick from one of five social media frames that you can customize with your own picture on Twibbonize. Add your photo, download the image, and save it as your profile picture on your social media accounts.
Facebook graphic
Download this graphic to post on Facebook
Instagram graphic
Download this graphic to post on Instagram
Shashi-Pena Syndrome Awareness Day
October 6
Families share their experiences living with Shashi-Pena Syndrome, an ultra-rare neurodevelopmental disorder caused by a change in the ASXL2 gene.
Shashi-Pena Syndrome facts
Shashi-Pena Syndrome is a neurodevelopmental disorder.
2-minute overview of Shashi-Pena Syndrome
Shashi-Pena Syndrome is caused by a change, commonly called a mutation, on the ASXL2 gene. This change is typically random (not inherited) and happens shortly after conception.
There are an estimated 40-45 people diagnosed with Shashi-Pena Syndrome globally.
Shashi-Pena Syndrome is in a subcategory of rare disorders called “ultra rare” and its the most rare of the ASXL-related disorders.
The features and abilities of people with Shashi-Pena Syndrome varies greatly. We do not yet know why there is a broad spectrum of features and abilities.
Some of the most common features of Shashi-Pena Syndrome include distinct facial features (large head, wide-set eyes, low set ears, birthmarks), low muscle tone (hypotonia), developmental delay, difficulty controlling blood sugar, orthopedic complications, heart defects, behavioral and sensory challenges, constipation, and seizures.
Shashi-Pena Syndrome Awareness Day is on October 6 in recognition of the date the paper that defined Shashi-Pena Syndrome as a distinct syndrome was published.
Dr. Loren Peña and Dr. Vandana Shashi, for whom the syndrome is named, are still actively caring for individuals with Shashi-Pena Syndrome.
Hashtags: #shashipena #shashipenaawareness #asxl2
Find more information on the Shashi-Pena Syndrome page.
Shareable resources
Social media profile frames
Pick from one of five social media frames that you can customize with your own picture on Twibbonize. Add your photo, download the image, and save it as your profile picture on your social media accounts.
Facebook graphic
Download this graphic to post on your Facebook page.
Instagram graphic
Download this graphic to post on your Instagram page.
Bainbridge-Ropers Syndrome Awareness Day
February 5
Bainbridge-Ropers Syndrome facts
2-minute overview of Bainbridge-Ropers Syndrome
Bainbridge-Ropers Syndrome is a neurodevelopmental disorder.
Bainbridge-Ropers Syndrome is caused by a change, commonly called a mutation, on the ASXL3 gene. This change is typically random (not inherited) and happens shortly after conception. In some rare cases, it may be inherited from a parent.
There are an estimated 300 people diagnosed with Bainbridge-Ropers Syndrome globally.
Bainbridge-Ropers Syndrome is in a subcategory of rare disorders called “ultra rare.”
The features and abilities of people with Bainbridge-Ropers Syndrome varies greatly. We do not yet know why there is a broad spectrum of features and abilities.
Some of the most common features of Bainbridge-Ropers Syndrome include developmental delay, low muscle tone (hypotonia), intellectual disability, speech delay or absent speech, severe feeding issues including cyclic vomiting, constipation, behavioral and sensory challenges, dental and palate abnormalities, constipation, and seizures.
Bainbridge-Ropers Syndrome Awareness Day is on February 5 in recognition of the date the paper that defined Bainbridge-Ropers Syndrome as a distinct syndrome was published.
Hashtags: #bainbridgeropers #bainbridgeropersawareness #asxl3
Find more information on the Bainbridge-Ropers Syndrome page.
Shareable resources
Social media profile frames
Pick from one of four social media frames that you can customize with your own picture on Twibbonize. Add your photo, download the image, and save it as your profile picture on your social media accounts.
Facebook graphic
Download this graphic to post on your Facebook page.
Instagram graphic
Download this graphic to post on your Instagram page.
