Volunteering

Are you interested in assisting Koolen-de Vries Syndrome Foundation? A number of volunteering opportunities exist and we would love to help you find a way to get involved.

Most Board Members are involved with a minimum of one committee. Take a look at the Board Member bios to see where everyone is involved. All of our Board Members are volunteers!

We also have a number of volunteers who have joined various committees. Read more about our volunteers here.

Communication Committee

The Communication Committee meets by conference call at least once per month with offline communication the rest of the month including coordination with the Board and other committees. The Committee maintains the Foundation’s social media pages (Facebook, Instagram and Twitter), generates email communication and  works on the website.

People interested in this Committee may have skills such as strong familiarity with social media platforms, marketing, graphic design, or working knowledge of WordPress.

If you are interested in learning more about the Communication Committee, please contact [email protected].

Development Committee

The Committee meets by conference call at least once per month with communication and coordination with the Board and other committees throughout the month as necessary. Typical projects may include planning and execution of the annual Kool Kampaign for Research and Giving Tuesday, finding and applying for grants, managing and soliciting donations from individuals and corporations.

People suited for this committee may have skills such as fundraising experience, grant writing and good verbal and written communication skills.

If you are interested in learning more about the Development Committee, please contact [email protected].

Outreach Committee

The Outreach Committee meets by conference call at least once per month with offline communication the rest of the month including coordination with the Board and other committees. The Outreach Committee has a number of functions including maintaining a database of KdVS families, monthly KdVS Connect zoom support meetings, peer support program, creating educational content, planning KdVS Awareness Day activities, running the Kool Store and more.

Volunteers may have skills including experience in the fields of special education, education, healthcare, counselor/therapist, organizer, excellent listener, open mind to diversity.

If you are interested in learning more about the Outreach Committee, please contact [email protected].

Research Committee

The Research Committee meets by conference call at least once per month with communication and coordination with the Board and other committees throughout the month as necessary. Typical projects may include creating a research strategy, finding new research opportunities, communication with researchers and networking and contacting similar rare disease organizations.

People suited for this committee may have skills such as a PhD student/candidate, medical/health professional, extensive research experience, organized, excellent verbal and written communication.

If you are interested in learning more about the Research Committee, please contact [email protected].

Summit Committee

The Summit Committee meets by conference call at least once per month with communication and coordination with the Board and other committees throughout the month as necessary. The main purpose of the committee is to planning and implementation of Patient Advocacy Summit.

People suited for this committee may have skills such as event planning, graphic designer, community organizer, fundraiser, organization and passion.

If you are interested in learning more about the Summit Committee, please contact [email protected].

Spread the Word!

One of our main missions is to spread awareness and YOU are a huge asset in helping to spread the word! Wear some KOOL gear, snap up some KdVS merch, talk to your friends, family, doctors, and community about Koolen-de Vries Syndrome and send them to www.kdvsfoundation.org! Participate in the annual KdVS Awareness Day on July 17 too!

Host a Fundraiser

Are you interested in hosting a fundraiser to help further the KdVSF mission of Education, Awareness and Research? We have many families who have hosted fundraisers of all sizes and many different types. We would be happy to talk to you about ideas! Fundraising is key to helping us generate funds to continue our work and we greatly appreciate your efforts. All board members and committee members are volunteers and we pledge to wisely use your donated funds.

Current Volunteer Needs

August 2022

 

Outreach-Education committee member (5 needed)
• 1 hour/week
• Meet with Education committee, a division of the Outreach committee
• Identify topics for discussion
• Secure speakers

Outreach Ambassador (10 needed)
• 1 hour/week
• Meet with Ambassador committee, a division of the Outreach committee
• Undergo peer support training
• Contact newly diagnosed families

Communications-Facebooker (1 needed)
• 2 hours/week
• Meet with communications committee
• Plan and strategize best use of Facebook platform
• Skills: Facebook superuser

Communications-Website (2 needed)
• 2 hours/week
• Meet with Communications committee
• Maintain KdVSF website
• Skills: WordPress, graphic design

Research committee member (5 needed)
• 1 hour week
• Meet with Research committee
• Develop research strategy
• Research individuals studying KdVS or related diseases/syndromes and contact him/her
• Skills: PhD student/candidate, extensive research experience

Summit committee member (5 needed)
• 2 hours/week
• Meet with Summit committee
• Plan and implement all aspects of Summit

Development committee member (5 needed)
• 1 hour/week
• Plan and execute the Development plan to include the Kool Kampaign, Giving Tuesday and donations from individuals, corporations, and grant