Join Our Mission: Board Leadership Opportunities
As we press forward with our mission to support families living with Skraban-Deardorff Syndrome, drive forward research, and cultivate a supportive and knowledgeable community, the SKDEAS Foundation invites enthusiastic individuals to consider taking on a leadership position on our Board. This opportunity is a call to share your expertise and insights to forge meaningful changes for those living with this rare condition.
Open Board Positions
We are looking for committed volunteers to fill potential new and existing board positions. Ideal candidates are those who have a deep commitment to our mission, bring diverse perspectives and expertise, and are ready to drive forward our initiatives in research, family support, and advocacy.
Our current Officers are:
Lisa L. Patterson, President
Kyle Hillman, Vice-President, Treasurer
Katie Grand, MS, CGC, Secretary
Dr. Matt Deardorff, Member At-Large
Cynthia Lang, Member At-Large
Cara Skraban, MD, Member At-Large
Our current Operating Board is:
Tomas Anker, Member At-Large
Francis (Frank) DelRossi, Events Committee Chair
Emily Gerst, Family Engagement Committee Chair
Kyle Hillman, Nominating Committee Chair
Andrew Houser & Emily Gerst, Birthday Club Committee
Cynthia Lang, Marketing/PR Committee Chair
Lisa L. Patterson, Fundraising Committee Chair
Andre (Carlos) Rodriguez, Information Technology Committee Chair
Bailey Wallace Lara, Community Outreach Committee Chair
Rebecca Woodbury, Communications Committee Chair
We would like to put together a new slate of officers to be voted upon at the hybrid meeting following the Family Meeting July 11 – 13 at Children’s Hospital of Philadelphia.
This new slate can be composed of both existing officers and new members.
Your Role and Impact
Board members play a critical role in guiding the strategic direction of SKDEAS, 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.
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Medical Research: Contribute your expertise in medical research to guide our ongoing efforts to better understand Skraban-Deardorff Syndrome. Your knowledge is crucial in helping us define our research priorities and foster meaningful collaborations.
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Nonprofit Governance: If your experience lies in nonprofit governance, you will be instrumental in strengthening our organizational structure and ensuring compliance with regulatory requirements. Your guidance will help maintain transparency and integrity in all our operations.
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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.
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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.
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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.
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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.
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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.
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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.
How to Express Your Interest
If you are currently serving in a Board or Committee capacity, please respond indicating if you would like to remain in the same role(s), or if you would like to rotate off and give someone else the opportunity to serve in that capacity.
If you are not currently serving in a Board or Committee capacity and are interested in exploring a position on the SKDEAS Board, please send your expression of interest, which role(s) are of interest to you, and a brief overview of your background and why you are passionate about our cause to info@skdeas.org or complete the form at the bottom of this page by May 31, 2024. We are eager to hear from you and explore how we can work together to further our mission.
Below, please find descriptions of each of the Board positions and Committees.
Why Join Us
Being part of the SKDEAS Board is more than a role—it's a chance to be at the forefront of pioneering efforts to improve outcomes and quality of life for those with Skraban-Deardorff Syndrome. Your leadership can help shape the future of our foundation and the community we serve. One of the first projects following the induction of the new slate of officers in July will be to work on a Strategic Plan for the foundation that will serve as a road map for the next five years of operation.
Thank you for considering this opportunity to make a difference. Together, we can continue to support families, fund critical research, and raise awareness about Skraban-Deardorff Syndrome. We look forward to the possibility of welcoming you to our board.
Warmest regards,
Kyle Hillman
Chair, Nominating Committee
Skraban-Deardorff Syndrome Foundation
Board Nomination Information
Officer and Committee Descriptions
THE
FOUNDATION’S
MISSION
To raise funds for research, promote public awareness, and align scientists, patients, parents, clinicians, government agencies, pharmaceutical companies and other organizations dedicated to treating people with Skraban-Deardorff Syndrome and related diseases.
Officer Descriptions
President
The President of the Skraban-Deardorff Syndrome Foundation presides at all meetings of the Board of Directors and is the principal executive officer of the organization. This role is responsible for leading the governance and strategic direction of the Foundation, ensuring the integrity of the board's processes, and maintaining a strong, productive relationship with the Executive Director. The President acts as the Foundation’s primary spokesperson, engages key community and donor relationships, and oversees the execution of significant financial and contractual decisions authorized by the Board. This position demands a committed leader who can effectively facilitate board activities and represent the Foundation in all external matters.
Vice-President
The Vice-President supports the President in all executive functions and assumes the President’s duties in their absence, ensuring continuity and leadership stability. This role involves leading board meetings when the President is unavailable and participating actively in strategic planning and execution. The Vice-President helps to cultivate board relationships and plays a critical role in fostering board engagement with the Foundation’s goals. Additionally, this position may involve overseeing specific initiatives as directed by the President and the Board, making it pivotal for maintaining the momentum of board operations and strategic initiatives.
Treasurer
The Treasurer manages the financial accountability and resources of the Skraban-Deardorff Syndrome Foundation. This officer oversees the financial operations, including the development and monitoring of the budget, ensuring the accuracy of financial reports, and presenting these reports to the Board. The Treasurer is also responsible for liaising with external auditors, ensuring compliance with financial regulations, and safeguarding the organization’s assets. This role is crucial for maintaining financial health and transparency, requiring a deep understanding of financial management within a nonprofit context.
Secretary
The Secretary of the Foundation ensures that all decisions and actions of the Board are accurately recorded and maintained. Key responsibilities include preparing minutes of board meetings, managing board communication, and ensuring compliance with legal and regulatory requirements. The Secretary also handles the distribution of materials related to board meetings and maintains official records and documentation. This role is essential for ensuring organizational effectiveness and governance, requiring meticulous attention to detail and strong organizational skills.
Committee Descriptions
Community Outreach Committee
The Community Outreach Committee is dedicated to building and maintaining relationships with the broader community to support the goals of the Skraban-Deardorff Syndrome Foundation. This committee focuses on reaching out to and engaging with various community groups, organizations, and individuals to raise awareness about Skraban-Deardorff Syndrome. Its responsibilities include organizing community events, developing partnerships with local organizations, and facilitating community-based projects. The committee also plays a vital role in educating the public about the syndrome and the Foundation's mission, serving as a bridge between the Foundation and the community at large.
Events Committee
The Events Committee is responsible for planning, organizing, and executing events for the Skraban-Deardorff Syndrome Foundation. This committee plays a key role in creating successful and memorable events that align with the Foundation's mission and goals. Tasks include conceptualizing event themes, coordinating logistics, managing budgets, engaging with vendors, and overseeing the smooth execution of each event. The committee's efforts are crucial in raising awareness, fostering community engagement, and generating support for the Foundation. Events range from small gatherings to large-scale fundraisers, each tailored to effectively communicate the Foundation's message and engage its community.
Family Engagement Committee
This committee aims to build inclusive and collaborative relationships with and among SKDEAS families around the world by welcoming families with newly diagnosed individuals to our growing community, offering resources and support that are accessible to all, promoting open communication between the Skraban-Deardorff Syndrome Foundation and SKDEAS families, and helping to build a strong sense of community among SKDEAS families. The Birthday Club, a subcommittee of the Family Engagement Committee, will build a sense of belonging and joy within the SKDEAS community by celebrating the birthdays of participating individuals. Birthday Club subcommittee members will collect birthdays, maintain and publish a SKDEAS birthday calendar, and share birthday wishes throughout the year.
Fundraising Committee
Keeping in mind that raising funds for research is central to the mission of the Skraban-Deardorff Syndrome Foundation, the Fundraising Committee works with Board to set goals for each calendar year and then develops strategies to reach those goals. The committee gives families the opportunity to help raise funds in ways that are most comfortable and rewarding to them, whether they be through social media campaigns, fundraising events, institutional philanthropy, merchandizing or direct mail and email. The committee strives to keep the “FUN” in FUNdraising, and considers “Friendraising” a fundamental part of its work.
Information Technology Committee
The Information Technology Committee is responsible for overseeing and managing the technology needs of the Skraban-Deardorff Syndrome Foundation. This includes maintaining and updating the Foundation's digital infrastructure, ensuring cybersecurity, managing data systems, and providing technical support to other committees. The committee also explores new technological solutions to enhance the Foundation's efficiency and effectiveness. By keeping the Foundation's technology up-to-date and secure, this committee plays a critical role in supporting all aspects of the Foundation's operations.
Marketing/Public Relations Committee
The Marketing/Public Relations Committee creates and implements strategies and tactics to communicate the Skraban-Deardorff Syndrome Foundation’s initiatives and updates in a clear and engaging way. The goal is to inspire the family and donor communities to get involved and help the Foundation achieve its mission. The committee also manages all social media accounts to promote Skraban-Deardorff Syndrome awareness around the world.
Nominating Committee
The primary responsibilities of the Nominating Committee are to identify, recruit, and nominate a diverse range of individuals to serve as members of the board of directors. Identification of well-qualified candidates will result from a carefully planned process designed to obtain influential, knowledgeable and representative leadership from the board’s jurisdiction. Overview includes: determining what is needed to strengthen the board; putting together a list of prospective nominees; developing a tentative slate of nominees; recruiting candidates who are willing to serve; developing a final slate of nominees and recommending this slate to the board prior to the annual meeting.
Communications Committee
The Communications Committee is integral in strengthening internal communication within our organization. It is tasked with developing and distributing newsletters to keep stakeholders, supporters, and families updated on the foundation's activities. Additionally, the committee provides training and support to members, focusing on the effective use of existing communication tools and resources. It also creates strategic communication plans to enhance organizational efficiency and clarity. Assessing and implementing new communication technologies is another key responsibility, aimed at streamlining communication processes. Furthermore, the committee organizes workshops and training sessions to enhance interpersonal and organizational communication techniques, ensuring a well-informed and collaborative environment.
Birthday Club Committee
The Birthday Club Committee enriches the SKDEAS community by celebrating individual milestones. Tasked with creating a heartfelt connection, this committee maintains a comprehensive birthday calendar and ensures that each member’s special day is recognized. Their role extends to organizing celebratory events that not only honor the birthdays but also strengthen community ties and support fundraising efforts. This committee embodies the joy of giving and fosters a sense of belonging among all SKDEAS families.