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Join Our Mission

As we continue our vital work supporting families affected by Skraban-Deardorff Syndrome, advancing research, and building a knowledgeable community, the SKDEAS Foundation is eager to welcome dedicated volunteers. This opportunity invites you to bring your skills and passion to various ongoing initiatives that make a real difference in the lives of those living with this rare condition. Join us in our commitment to create meaningful, lasting impacts.

Your Role and Impact

Volunteers play a critical role in advancing  the SKDEAS Foundation, ensuring we meet our goals and expand our reach. If your background is in any of the following areas—or even in fields not listed here—your contribution will be invaluable. We welcome diverse perspectives and skills that can enhance our efforts and drive our mission forward.

  • Fundraising: As a key member of our fundraising efforts, your experience will help us nurture and grow our funding base. Your approach to fundraising will play a critical role in maintaining and enhancing our ability to support research and community initiatives. Your engagement with donors and thoughtful strategies will help sustain our projects and create opportunities for progress.

  • Family Advocacy: With experience in family advocacy, you can help us enhance our support networks for families affected by Skraban-Deardorff Syndrome. Your insights will guide the development of programs that provide meaningful support and resources to our community.

  • Marketing and Public Relations: Use your marketing skills to enhance our outreach and public engagement. Craft compelling narratives that effectively communicate our mission and achievements to a broader audience.

  • Social Media Expertise: With your knowledge of social media strategies, expand our digital presence and engage with communities online to promote awareness and participation in our cause.

  • Writing and Content Creation: Your ability to create impactful content will play a critical role in how we communicate our goals, initiatives, and successes. Help us tell our story in ways that inform, inspire, and mobilize our audience.

  • Information Technology: Utilize your IT skills to support and improve our digital infrastructure. Ensure that we use the best tools and technologies to enhance our efficiency and outreach.

Community Outreach Committee

This committee is dedicated to building and maintaining community relations to enhance awareness of Skraban-Deardorff Syndrome. It focuses on engaging various community groups through organized events and partnerships, playing a vital role in educating the public about the syndrome and the Foundation's mission.


Events Committee

Responsible for planning and executing events, this committee ensures each event—from small gatherings to large fundraisers—effectively communicates the Foundation's mission, engaging the community and supporting fundraising efforts through meticulous management of themes, logistics, and budgets.


Family Engagement Committee

This group works to create a supportive network for families affected by Skraban-Deardorff Syndrome, welcoming new families and providing accessible resources. It also manages the Birthday Club, celebrating individual milestones to foster community belonging.


Fundraising Committee

Central to the Foundation's mission, this committee collaborates with the board to set annual fundraising goals and develop effective strategies. It engages families in diverse fundraising activities, emphasizing fun and inclusivity.


Information Technology Committee

This committee oversees the Foundation's digital infrastructure, ensuring up-to-date, secure technology supports all operations. It focuses on enhancing efficiency and exploring new technological solutions.


Marketing/Public Relations Committee

Tasked with promoting the Foundation's initiatives, this committee implements strategies to engage the donor community and manage social media accounts, increasing global awareness of the syndrome.


Nominating Committee

Identifies and recruits diverse board members, ensuring the board’s composition supports the Foundation's goals through a carefully planned nomination process.


Communications Committee

Essential for internal communication, this committee develops newsletters, supports members, and organizes training to enhance organizational communication and efficiency.


Birthday Club Committee

Celebrating birthdays within the SKDEAS community, this committee strengthens ties and supports fundraising efforts by maintaining a birthday calendar and organizing celebratory events.

Express Your Interest

Ready to make a significant impact? We warmly invite you to join our cause. Connect with us by emailing or by filling out the volunteer form below. Let's explore how your unique abilities can help advance our mission.

Why Join Us

As a volunteer, you will be at the heart of our strategic initiatives, helping to shape the future of our foundation and the community it serves. Your involvement goes beyond volunteering; it’s about making a real difference and seeing the direct impact of your efforts.


Volunteer Information

Committee Summaries

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Submit Your Interest

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