Moebius Syndrome Sign Up Information

Dear Friend,

The Moebius Syndrome Foundation Community Census is off to a great start!   More than 500 people have already completed the form. 

THANK YOU if you have already particiapted.iIf you have not yet participated,  please update your record today!

It should take no more than 5 minutes and will help our foundation immensely.  By updating your information, you can help us make informed decisions about speakers/topics at future conferences and how to best connect our community members.

Update your record today using the following links:

Individual with Moebius syndrome

Parent of an individual with Moebius syndrome

Friend or family member of someone with Moebius syndrome

A professional working with Moebius syndrome

You can also scan the QR code on the postcard that you should have received in the mail!

Thank you for being part of our community!

Sincerely,

Jacob Licht

Board Chairman

Let’s make the most out of our time at home and make it fun & creative! Artists NEVER stop creating, and now is the time to show up, share your talents, & spread some joy! 

Introducing…the Moebius Syndrome Foundation Virtual Talent Show!

This talent show is for children, teens, and adults with Moebius syndrome. Pre-recorded talents that are submitted will be broadcast to the Moebius community on on July 17, 2020.

The deadline to sign-up is June 15, 2020.

Want to sign-up? Please email jenny@moebiussyndrome.org

Dear Friends,

Today, #GIVINGTUESDAY, is a global day of giving and unity that will take place on May 5, 2020 as an emergency response to the unprecedented need caused by COVID-19.

A global threat like COVID-19 affects more than just the infected. A pandemic like this touches every person on the planet, and it presents an opportunity to come together as a global community.

We encourage you to consider the Moebius Syndrome Foundation during these times, if you are able. Supporters can start donating now to make a difference for a family or individuals affected by Moebius syndrome. Your donation will be used to support our mission. As an organization dedicated to improving the lives of those living with Moebius syndrome:

• We send packets of information to all new members. Babies and toddlers receive a Moebius Syndrome with mommy 2 Foundation t-shirt.

• We work with families with newborns who have been recently diagnosed as well as those with older children.

• We provide resources and networking opportunities for adults and young adults living with Moebius.

• We support and fund scientific research into the causes and treatments for Moebius syndrome.

• We send a bi-annual newsletter to all of our members.

• The Moebius Syndrome Foundation Conference is an amazing event and is held every two years.

• We provide financial assistance to families in need through our conference scholarship fund.

PLEASE DONATE AT
https://moebiussyndrome.org/get-involved/donate/

Your donation in any amount will be GREATLY appreciated!

Thank you!

The Moebius Syndrome Foundation

The mission of the Moebius Syndrome Foundation is to provide information and support to individuals with Moebius syndrome and their families, promote greater awareness and understanding of Moebius syndrome, and to advocate for scientific research to advance the diagnosis and treatment of Moebius syndrome and its associated conditions.

Friends,

We know the coronavirus pandemic is having a significant impact on our community.  In this time of uncertainty, we want you all to know that we are here for you and that we will get through this pandemic together!

Let's continue to stay connected in the Home For The Moebius Community Facebook Group.   We have assembled a list of resources for our community below. This is by no means a complete list so please feel free share other resources you find helpful in the Facebook group!

Feel free to reach out to DIna or Jenny if you have any specific questions, ideas or concerns.  

Be well, 

Dina Scalone, Executive Director  (dina@moebiussyndrome.org)

Jenny Whitman, Events and Program Manager  (jenny@moebiussyndrome.org)

COVID-19 RESOURCES

LIVING RARE

• NORD is hosting a special webinar about guidance on living with a rare disease and maintaining your physical and mental health in the time of COVID-19. This webinar is perfect for patients, caregivers, advocates, students and the public. Tuesday, March 31 2:00pm - 3:00pm EDT Register for the FREE Webinar 

• The National Health Council,  hosted a webinar to address the concerns COVID-19 is causing globally. The speakers discussed the ways patient groups can assist their members and other constituents in reducing the impact of COVID-19, such as how patients with chronic diseases can avoid the illness, what to do if they feel sick and how patient groups can prepare to field inquiries from their members. Access the webinar recording

• Global Genes has created COVID-19 rare disease resource list to help everyone around the world who is in quarantine or practicing social distancing. This includes government resources, entertainment, opportunities for virtual social interaction and more. We encourage everyone to contribute.  Please share your resources with us at advocacy@globalgenes.org so we can add to this list, and please share this list with your community.

ADVOCATE

The rare disease community voice needs to be heard in government as COVID-19 challenges threaten to impact continuity of care for rare disease patients.

• NORD Rare Action Network  https://rareaction.org/get-involved/join-rare-action/
• Every Life Foundation https://everylifefoundation.org/covid19/

CONNECT

• The Home For the Moebius Community Facebook Group https://www.facebook.com/groups/1747904085515409/
• Moebius Moms & Dads Facebook Group https://www.facebook.com/groups/240599469393672/  
• Many Faces of Moebius Facebook Page https://www.facebook.com/Manyfacesofmoebiussyndrome/
• One way we can overcome fear of the unknown and create a sense of belonging is by sharing our stories with one another. Submit your story using this link for a chance to be published on the Global Genes website: https://globalgenes.org/share-your-story/
• Our Odyssey is hosting online meet ups to help with social and emotional support for young adults living with rare and/or chronic conditions during this time of increased isolation. This organization was founded by young adults living with rare and chronic conditions. Details are below; please share with your community:

MENTAL HEALTH

We understand the importance of treating mental health in addition to physical health, as many patients are now isolated and concerned about what's to come. Here are some resources you can share with your community when they need additional support:

• Mental Health America: dedicated to those living with mental illness and to promoting overall mental health
• Center for Chronic Illness: provides educational and emotional support for people with rare/chronic illnesses via web-based support groups
• Happy- 24/7: offers support and encouragement from peer support counseling (new users can try it free of charge)