GAND Awareness Day
September 16, 2024
Helping Hands for GAND launched the first GAND Awareness Day on September 16, 2018. We will continue to call for a special day of raising awareness of GAND every year on September 16. Whether you're preparing for the next GAND Awareness Day or simply looking for ways to spread the word throughout the year, there are several ways you can get involved and show your support!
For starters, be sure to follow us on Facebook and share our posts!
Ways You Can Help
Start a Fundraiser
|
Reach out to us any time of year for your special occasion or fundraiser, and we will gladly create a custom fundraising web page for you where donors can give directly to Helping Hands for GAND. Families have done fun runs, cycling challenges, bake sales, and other special events to raise awareness and support of GAND utilizing a fundraising page. Others simply tell their story and share on social media. Whatever type of fundraiser interests you, we're happy to help!
Email [email protected] to request your personalized page. Include any details and pictures you'd like us to feature. |
|
Raise a Toast
Make a toast to a worthy cause and sip in style with a Helping Hands for GAND tumbler! A limited quantity is available so order soon.
Note: International shipping is now available!
Note: International shipping is now available!
Sport GAND Apparel
Show your support for families affected by GAND by wearing a GAND Awareness shirt! Several designs and styles are available. For every shirt ordered, Helping Hands for GAND receives about $9! Click here to order yours today!
Note: Shirts will ship after the campaign has ended. International shipping IS available.
Note: Shirts will ship after the campaign has ended. International shipping IS available.
Color Your Support
|
Print coloring pages for your family and share with friends in person and/or through social media!
Want to not only spread GAND awareness, but also have a chance to win a GAND tumbler?! Here are the details:
|
Post on Social Media
Follow Helping Hands for GAND on social media! We're on Facebook, Instagram, Twitter, and YouTube. Write a post or share one from us. Tell your friends and family why GAND awareness is important to you, and link to this page so they can learn how to join your efforts to raise awareness of this rare disorder!
Spread the Word
Tell others about GAND by sharing some information about the disorder and our charitable organization by printing the following files for your own GAND Awareness event. The GAND Awareness Cards are designed for business-size cards.
|
| ||
|
| ||
|
| ||
|
| ||
|
Personalize your message with this "About Me" document that you can edit and share with family, friends, teachers, therapists, etc.
To edit, you will first need to download or make a copy of the file. Both options are found under "File" after following the link above. |
Support on the Go
|
Raise awareness while simply driving around town with this 8" Car-Safe magnet. For every magnet ordered, $5 will be donated to Helping Hands for GAND.
|
Contact Your Local News Outlets
Everyone loves a good story! Contact your local news station and/or paper, and share how you and your loved ones are impacted by GAND.
Request a Proclamation
Ask your state governor to proclaim that September 16th is recognized as GAND Awareness Day in your state! Each state has different guidelines for how to go about this and who can make the request. If you need help, please contact us at [email protected]. Please let us know if you have made a request in your state. Below is a sample proclamation for you to use in your request.
PROCLAMATION
WHEREAS, GATAD2B-associated neurodevelopmental disorder (GAND) is a rare genetic disorder caused by a mutation of the GATAD2B gene on chromosome 1 resulting in a loss of function of the GATAD2B gene, which is an important gene for normal cognitive development; and
WHEREAS, the loss of function of the GATAD2B gene results in some degree of cognitive impairment, hypotonia, and limited speech, and persons with GAND are likely to present with feeding difficulties, strabismus, macrocephaly, and may possibly develop epilepsy; and
WHEREAS, approximately 290 people are affected by this genetic disorder worldwide, with almost half of those identified cases in the United States and over 90% of cases being children; and
WHEREAS, GAND, which is presently incurable, impacts an individual’s ability to communicate effectively in three major ways:
Speech: Motor planning impairments in persons with GAND create challenges in executing the necessary movements and coordinated breathing in the proper order and degree to produce intelligible speech consistently and on cue. Many individuals with GAND use some form(s) of augmentative and alternative communication (AAC), such as sign language or high-tech, speech-generating communication devices.
Fine Motor: Although many individuals with GAND use some form of AAC to augment their speech or as an alternative to speech, these individuals also typically face fine motor impairments, which may result in greater difficulty using sign language effectively or in being able to access a communication device as easily.
Language Acquisition: All people need high exposure to language modeled in their native tongue and primary form of communication in order to develop a robust vocabulary in both their receptive and expressive language skills. This language development is also a critical component of cognitive development. Those who use AAC do not typically have anywhere near the same level of exposure to communication partners using the same system of communication as do their typical peers. This lower exposure makes the process of language acquisition longer and more challenging for individuals relying on AAC; and
WHEREAS, the majority of loss-of-function mutations of the GATAD2B gene in this ultra-rare disorder are single nucleotide polymorphisms, and, therefore, are often only discovered through exome sequencing, to which many families still do not have access due to cost and lack of health insurance benefits and coverage; and
WHEREAS, the GAND community is uniting around the world to spread public awareness but especially to be recognized annually on the 16th of September:
NOW, THEREFORE, I, [Governor’s name], Governor of the State of [Name of State], do hereby extend greetings and best wishes to all observing September 16, 2024, as GAND AWARENESS DAY in [Name of State].
WHEREAS, GATAD2B-associated neurodevelopmental disorder (GAND) is a rare genetic disorder caused by a mutation of the GATAD2B gene on chromosome 1 resulting in a loss of function of the GATAD2B gene, which is an important gene for normal cognitive development; and
WHEREAS, the loss of function of the GATAD2B gene results in some degree of cognitive impairment, hypotonia, and limited speech, and persons with GAND are likely to present with feeding difficulties, strabismus, macrocephaly, and may possibly develop epilepsy; and
WHEREAS, approximately 290 people are affected by this genetic disorder worldwide, with almost half of those identified cases in the United States and over 90% of cases being children; and
WHEREAS, GAND, which is presently incurable, impacts an individual’s ability to communicate effectively in three major ways:
Speech: Motor planning impairments in persons with GAND create challenges in executing the necessary movements and coordinated breathing in the proper order and degree to produce intelligible speech consistently and on cue. Many individuals with GAND use some form(s) of augmentative and alternative communication (AAC), such as sign language or high-tech, speech-generating communication devices.
Fine Motor: Although many individuals with GAND use some form of AAC to augment their speech or as an alternative to speech, these individuals also typically face fine motor impairments, which may result in greater difficulty using sign language effectively or in being able to access a communication device as easily.
Language Acquisition: All people need high exposure to language modeled in their native tongue and primary form of communication in order to develop a robust vocabulary in both their receptive and expressive language skills. This language development is also a critical component of cognitive development. Those who use AAC do not typically have anywhere near the same level of exposure to communication partners using the same system of communication as do their typical peers. This lower exposure makes the process of language acquisition longer and more challenging for individuals relying on AAC; and
WHEREAS, the majority of loss-of-function mutations of the GATAD2B gene in this ultra-rare disorder are single nucleotide polymorphisms, and, therefore, are often only discovered through exome sequencing, to which many families still do not have access due to cost and lack of health insurance benefits and coverage; and
WHEREAS, the GAND community is uniting around the world to spread public awareness but especially to be recognized annually on the 16th of September:
NOW, THEREFORE, I, [Governor’s name], Governor of the State of [Name of State], do hereby extend greetings and best wishes to all observing September 16, 2024, as GAND AWARENESS DAY in [Name of State].