Move to Cure STXBP1 Disorders
- Date Sun 1st September 2024 - Tue 3rd December 2024
- Time 12:00AM EST
- Location Virtual Event
- Price $27.50
- Races 1 race
Event summary
Join the global movement to "Shine a Light on STXBP1 Disorders" during the Move to Cure STXBP1 Disorders event, taking place from September 1, 2024, through December 3, 2024. Families and friends from around the world are encouraged to walk, run, hike, or bike in their own neighborhoods to raise awareness and funds for STXBP1 disorders, a rare condition affecting brain communication and leading to symptoms such as epilepsy and cognitive impairment. This year, the goal is to raise an incredible $100,000 to support critical research and development of therapies and treatments.
Get ready to lace up your shoes, gather your loved ones, and get moving for a cause that truly matters! Whether you choose to participate in an in-person event or a virtual challenge, every step helps in the fight against STXBP1 disorders. Be sure to wear your STXBP1 attire, capture the moments, and share your journey with the community using #MOVE2CURESTXBP1. Together, we can make a difference and work towards a brighter future for those affected by STXBP1 disorders!
Get ready to lace up your shoes, gather your loved ones, and get moving for a cause that truly matters! Whether you choose to participate in an in-person event or a virtual challenge, every step helps in the fight against STXBP1 disorders. Be sure to wear your STXBP1 attire, capture the moments, and share your journey with the community using #MOVE2CURESTXBP1. Together, we can make a difference and work towards a brighter future for those affected by STXBP1 disorders!
Organiser's Description
Be part of the global movement as the entire STXBP1 Community gathers near & far to "Shine a Light on STXBP1 Disorders"! Families and friends are encouraged to walk, run, hike or bike right in their own neighborhoods and communities. We have a big goal this yearto raise $100,000but we know that our INCREDIBLE community is up for the challenge.
WHAT?
Grab your family and friends and let's get MOVING to Shine a Light on STXBP1 Disorders! The STXBP1 Foundation invites you to join us in raising awareness and funds in honor of our loved ones living with an STXBP1 disorder. Create a team or join a team and Get Moving across the globe to CURE STXBP1 Disorders! Each team will have their own event page...whether it be in-person or virtual. Please refer to your specific team page once registered to find the details for your team's Move to Cure STXBP1 Disorders event. Lets get MOVINGand Shine a Light on STXBP1!
WHY?
STXBP1 Disorder is a rare developmental and epilepsy disorder caused by mutations in the STXBP1 gene. The STXBP1 gene is located on chromosome 9. Changes to the STXBP1 gene impacts communication in the brain. Key symptoms include epilepsy, global developmental delay, cognitive impairment, autism, and movement disorders. Move to Cure event registrations and donations fund critical research to accelerate the development of therapies and treatments...and one day a cure!
WHO?
The STXBP1 Foundation, a 501(c)3 dedicated to raising awareness and finding a cure for STXBP1-Related Disorder. We work with families, physicians, scientists, and pharmaceutical innovators. The STXBP1 Foundation was created by a group of dedicated parents. Our nonprofit is focused on advocacy, driving research, and providing our families and their physicians with information and resources.
WHEN?
The Move to Cure STXBP1 Disorders global event launches in September (STXBP1 Awareness Month) and will extend through December 3rd (Giving Tuesday). If your team is not having an in-person event, pick a day and put on your STX attire and just get moving for a CURE.Be sure to take photos & share with us. You can share photos with us by posting and tagging us; Stxbp1 Disorders on FB and stxbp1_foundation on IG. Also include #MOVE2CURESTXBP1 in your posts. Be sure to check your team page to see if and when your Move to Cure team will be hosting an in person or virtual event.
HOW TO JOIN A TEAM
On the STXBP1 Move to Cure Event page click on the maroon Register- Join a Team at the top.
If you have never used Run Sign Up it will prompt you to create an account and Add a Registrant. You will need to register yourself, before you can create a team. If you already have a profile in Run Sun Up, select your profile & continue.
On the next page agree to the Waiver by typing your name in the box.
On the next page you will be asked if you want to be added to the mailing list. Now your registration is complete and you can create a team!
you have registered and joined a team make sure to go to your teams page under the "Donations" tab and read through your teams information to find out whether they will be having an in-person local event on a specific date or a virtual event where you get to pick where and when you want to get out and get moving!
3. NEW MOVE TO CURE STXBP1 DISORDERS SHIRTS: We have refreshed the shirt design with a fun new look this year! Don't miss out on a custom shirt for your team. All shirts will be shipped directly to your home address. If you are starting a team, create a team shirt (link coming soon), and be sure to add it to your team page. If you are joining a team, look for your team's custom shirt link.
REGISTER AND/OR DONATE TODAY!!
WHAT?
Grab your family and friends and let's get MOVING to Shine a Light on STXBP1 Disorders! The STXBP1 Foundation invites you to join us in raising awareness and funds in honor of our loved ones living with an STXBP1 disorder. Create a team or join a team and Get Moving across the globe to CURE STXBP1 Disorders! Each team will have their own event page...whether it be in-person or virtual. Please refer to your specific team page once registered to find the details for your team's Move to Cure STXBP1 Disorders event. Lets get MOVINGand Shine a Light on STXBP1!
WHY?
STXBP1 Disorder is a rare developmental and epilepsy disorder caused by mutations in the STXBP1 gene. The STXBP1 gene is located on chromosome 9. Changes to the STXBP1 gene impacts communication in the brain. Key symptoms include epilepsy, global developmental delay, cognitive impairment, autism, and movement disorders. Move to Cure event registrations and donations fund critical research to accelerate the development of therapies and treatments...and one day a cure!
WHO?
The STXBP1 Foundation, a 501(c)3 dedicated to raising awareness and finding a cure for STXBP1-Related Disorder. We work with families, physicians, scientists, and pharmaceutical innovators. The STXBP1 Foundation was created by a group of dedicated parents. Our nonprofit is focused on advocacy, driving research, and providing our families and their physicians with information and resources.
WHEN?
The Move to Cure STXBP1 Disorders global event launches in September (STXBP1 Awareness Month) and will extend through December 3rd (Giving Tuesday). If your team is not having an in-person event, pick a day and put on your STX attire and just get moving for a CURE.Be sure to take photos & share with us. You can share photos with us by posting and tagging us; Stxbp1 Disorders on FB and stxbp1_foundation on IG. Also include #MOVE2CURESTXBP1 in your posts. Be sure to check your team page to see if and when your Move to Cure team will be hosting an in person or virtual event.
HOW TO JOIN A TEAM
On the STXBP1 Move to Cure Event page click on the maroon Register- Join a Team at the top.
If you have never used Run Sign Up it will prompt you to create an account and Add a Registrant. You will need to register yourself, before you can create a team. If you already have a profile in Run Sun Up, select your profile & continue.
On the next page agree to the Waiver by typing your name in the box.
On the next page you will be asked if you want to be added to the mailing list. Now your registration is complete and you can create a team!
you have registered and joined a team make sure to go to your teams page under the "Donations" tab and read through your teams information to find out whether they will be having an in-person local event on a specific date or a virtual event where you get to pick where and when you want to get out and get moving!
3. NEW MOVE TO CURE STXBP1 DISORDERS SHIRTS: We have refreshed the shirt design with a fun new look this year! Don't miss out on a custom shirt for your team. All shirts will be shipped directly to your home address. If you are starting a team, create a team shirt (link coming soon), and be sure to add it to your team page. If you are joining a team, look for your team's custom shirt link.
REGISTER AND/OR DONATE TODAY!!
Races
-
Move to Cure STXBP1
Incl. $2.50 Fee
$27.50
Each team will hold their own Move to Cure Event whether it be in-person or virtually. The goal is to spread awareness for STXBP1 disorders by just getting out and getting moving, and to raise funds to accelerate research for a cure!
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