LGS Foundation Community Teams

Do you want to share your enthusiasm and energy? Do you want to share your experience? Do you want to make an impact in the lives of those living with LGS? Then we need you! Join an LGS Foundation Community Team today!

Join a Community Team and Make a Difference!

LGS Foundation Community Teams are made up of volunteers, like you, who care about others and share a desire to give back to their community. We believe in making a difference, one person at a time. Make an impact by joining one of our new community teams today. Together we make this possible.

Siblings in Action Team

Special needs siblings offer a unique insight into the LGS journey. Their experiences bring a wealth of knowledge to the rare disease community. LGS sibs know first hand what it is like to live with a brother or sister with a rare disease. The siblings in action team bring a special perspective to our community, offering hope and support to others in similar positions while supporting the community as a whole.

Siblings in Action Team requirements include:

  • Attend regularly scheduled team meetings
  • Inspire hope in our community
  • Your voice matters. Share with us what siblings need most as we choose a project that will support others in the LGS community
  • Bring your enthusiasm and ideas to make an impact in the lives of others
  • Turn your ideas into actions​
  • Share a smile with those who might need it while doing something you enjoy

​(The Siblings in Action Team is open to siblings of all ages with parent consent)

Click here to join the LGS Foundation “Siblings in Action Team“.

Compassionate Care Team

As LGS caregivers we may find ourselves facing times when we might need someone to lean on. Between the frequent hospital stays, numerous therapies, and doctor visits, we often find ourselves feeling overwhelmed, alone, and isolated. The compassionate care team is here to help change that! The LGS Foundation’s Compassionate Care team is here to help caregivers feel supported.

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Compassionate Care Team requirements include:

  • Attend regularly scheduled team meetings
  • Make a positive impact and inspire others
  • Share what has given you strength for the journey
  • Bring your passion to support others through creating a positive experience
  • Bring your enthusiasm and energy to a project that will pay it forward
  • Turn your ideas into actions​
  • Reach out to others by sharing yourself

Click here to join the LGS Foundation “Compassionate Care Team“.

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Engagement & Awareness Team

Awareness is an important part of what we do at the LGS Foundation. By raising awareness we can improve early diagnosis, encourage policymakers to increase access to services, and fund research into LGS. We can also help to reduce the feelings of isolation and discrimination faced by patients and caregivers. In the words of Dr. Seuss, “Unless someone like you cares a whole lot, nothing is going to get better. It’s not.”

The LGS Foundation’s Engagement & Awareness Team will meet regularly to collaborate on creative solutions to maximize community outreach and LGS awareness.

Engagement & Awareness Team requirements include:

  • Attend regularly scheduled bi-monthly team meetings
  • Collaborate with LGSF staff and E&A team members for community engagement projects
  • Play an active role in community engagement and awareness to the broader LGS community
  • Commit to making four or more LGS-related social media posts per month on your personal media platform.
  • Foster relationships outside of the LGS community through outreach and social shares.

Click here to join the LGS Foundation “Engagement & Awareness Team“.

LGS Foundation community teams will be limited to 5-7 participants per team. Members will be chosen on a first-come, first-serve basis.Once teams are full, additional applicants will be placed in a queue and given the opportunity to join once a position becomes available.