Volunteer With Us
The DYNC1H1 Association is run by a small group of determined, busy volunteers. We need your help to do what’s best for our community.
We’re looking for interns and community volunteers , and are always looking for help with fundraising, translation into other languages, and sharing your story. Together we can make DYNC1H1-Related Disorders a condition with a treatment.
Internships
Social Media Manager
-
Collaborate with the DYNC1H1 Association executive board to develop and implement a social media content calendar.
Write timely and engaging posts for Facebook, Instagram, X (Twitter), and LinkedIn.
Create visually appealing graphics using Canva.
Monitor community engagement, respond to comments, and foster stronger online connections.
Develop outreach campaigns to encourage participation in patient features, fundraising initiatives, and community activities.
Able to commit to 2-5 hours per week.
-
Strong writing and communication skills.
Familiarity with social media platforms, trends, and rare disease advocacy.
Basic design skills (Canva or similar tools).
Reliable, detail-oriented, and responsive.
-
Flexible, approximately 5–15 hours per month.
Remote position.
Benefits of Volunteering:
Gain real-world experience in nonprofit work, science communication, and community engagement.
Build your professional portfolio with published content.
Make a meaningful impact on rare disease advocacy and research awareness.
Receive mentorship and networking opportunities within the rare disease and research communities.
Be featured on the DA’s website as a present or past Intern.
Science Communicator
-
Read, analyze, and interpret scientific publications, clinical trial updates, and related materials.
Translate complex ideas into clear, layperson-friendly blog posts, infographics, and educational materials.
Create visuals and graphics to accompany written content or collaborate closely with others to do so.
Communicate with authors and researchers as needed for clarification or outreach.
Collaborate with the executive board on revisions and final publications.
-
Graduate or undergraduate background in biology, genetics, neuroscience, or related fields and a willingness to learn.
Strong science communication and writing skills.
Ability to simplify complex concepts for a general audience.
Creative thinker with interest in advocacy and patient education.
-
Flexible, approximately 5–15 hours per month.
Remote position.
Benefits of Volunteering:
Gain real-world experience in nonprofit work, science communication, and community engagement.
Build your professional portfolio with published content.
Make a meaningful impact on rare disease advocacy and research awareness.
Receive mentorship and networking opportunities within the rare disease and research communities.
Be featured on the DA’s website as a present or past Intern.
Community
Patient & Parent
Advisory Council
-
Provide ideas, input, and feedback on the DA’s initiatives.
Work with the executive board to improve fundraising, community engagement, and recruitment.
Assist with short-term initiatives, including outreach campaigns and the DA’s annual fundraisers.
-
Parents or patients with knowledge about DYNC1H1-related disorder or a willingness to learn.
Familiar with rare disease patient advocacy initiatives.
Experience with fundraising, drug discovery, rare disease advocacy, community outreach, event planning, or other facet complementary to the DA’s mission.
Are a patient with a DYNC1H1-related disorder OR a primary caregiver for a patient.
Are in our Patient Contact Registry, and have registered and completed all Simon’s Searchlight research components.
-
Able to respond to emails within 48 hours.
Available for monthly 1 hour meetings and/or quarterly 1.5 hour meetings.
Panelists For
Community Events
-
Speak on a panel at virtual community events based on your experiences.
Panels will be organized by topic, and panelists can be family members or professionals in that field.
Proposed Topics:
Experienced Parents (13+ year olds )
Teen to Teen
Speech Challenges
Mobility Challenges
Behavioral Challenges
Grief after Diagnosis
Epilepsy Experiences
Research Participation
Supporting Family & Friends who have a child with a disability
-
Each Panel will be for 1 hour via Zoom at a time found convenient for all participants.
Popular topics will be repeated, and panelists may be invited to join for a second time.
-
Comfortable speaking about the topic and answering questions to a community group on Zoom.
Able to speak in English, or willing to help recruit audiences in other languages.
Seen the internship details and interested in applying?
Email contact@dync1h1.org with which of the position(s) you’re interested in, and we’ll get you an application.
Not up for any of the above? Keep scrolling!
Other ways to support the DYNC1H1 Association
Fundraise
Host a dinner with friends, organize a hat day at your child’s school, make a custom designed T-Shirt that represents your loved one. There are many low-effort options, and every bit helps. Click below for our fundraising manual with ideas and guidance for how to raise money for this worthy cause.
Speak out
Write about your experiences for the blog, send us pictures, translate graphics into other languages, attend events, join a community chat, and participate in research.
We need your help to keep our content fresh and accessible to all audiences.
Donate
Become a monthly sustainer to ensure we can continue our programming for families and researchers alike. Donate to help enhance our drug repurposing projects or to create a new model to ensure every DAND patient is represented. Science requires funding, and for that, we need your help.
Help us share more beautiful DYNC1H1 faces with just a few taps!
If you are open to the DYNC1H1 Association sharing photos of you or your child on social media, the website, and other materials, please submit some images below.
We’re also looking for families interesting in sharing their stories. We would love to include you or your child in our weekly patient highlight social media series, in a longer versions of patients’ stories as blog posts, or simply as standalone photos for the website and media. See past examples and follow us on Instagram and Facebook!
Now share those adorable faces with us!
Our families need you.
Without your generous help, we cannot make this world an easier place for those with DYNC1H1 Associated Neurological Disorders. This is an urgent plea from a community living with a debilitating and degenerative disease. Help us. Donate Today.