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Hope for HIE – Hypoxic Ischemic Encephalopathy Hope for HIE – Hypoxic Ischemic Encephalopathy

Volunteer Hub

Interested in getting involved with Hope for HIE, but unsure where to start? Curious how your skills and strengths can be used to make a positive impact on the global HIE community?

Volunteering across the different opportunities we have is an easy way to get connected with the HIE community, make connections, and give back to ensure no family faces HIE alone and feels supported in their journey.

Check for opportunities below, or sign up for our eNewsletter and you’ll never miss the latest news and ways to get involved!

Volunteer Opportunities:


Care Committee

Our care committee coordinates various peer-driven projects to support HIE families across many ages, outcomes and circumstances. We want to ensure no family faces HIE alone, and are always looking for new ways to get volunteers involved.

Birthday Card Committee

As a branch of our Care Committee, Birthday Card volunteers receive branded birthday cards, envelopes, and stamps to personalize, sign, and send to our HIE community members on their birthdays.

Responsibilities:

  • 1 month a year (estimated total of 60 minutes)
  • Currently open to only US-based volunteers (but the card program sends globally!!!)
  • Communicate regularly with the committee about progress with the program
  • Write uplifting messages to families in provided cards and mail them out on designated month 
  • Maintain confidentiality of participants in the program and follow privacy best practices
  • Communicate with sensitivity regarding loss families that may participate in the program
  • Keep track of supplies and work with foundation staff to communicate program needs
  • Volunteers are selected to serve on one-year, renewable terms

PROGRAM STATUS: Not accepting new volunteers at this time

Newly Diagnosed Cards

As a branch of our Care Committee, Newly Diagnosed Card volunteers receive branded postcards to write uplifting messages to HIE families currently in the NICU or PICU. These will be included in our support packages that are sent monthly to hospitals worldwide.

Responsibilities:

  • 25-50 postcards a year, or as needed [estimated total of 120-180 minutes]
  • Currently open to global participation 
  • Follow the provided Hope for HIE Care Committee Writing Guidelines
  • Communicate regularly with the committee about progress with the program
  • Write uplifting messages to families in provided cards and mail them back to Hope for HIE (our fulfillment center will include these cards in our NICU/PICU support packages. No stamps needed!)
  • As a donation to Hope for HIE and this program, you will be responsible for the cost of sending back the cards — in bulk– to Hope for HIE (current estimation is less than $15 a year)
  • Maintain confidentiality of participants in the program and follow privacy best practices
  • Keep track of supplies and work with foundation staff to communicate program needs

PROGRAM STATUS: Open

APPLY NOW

Hospitalization Support

As a branch of our Care Committee, Hospitalization Card volunteers receive branded postcards to write uplifting messages to HIE families currently experiencing hospitalization.

Responsibilities:

  • 25-50 postcards a year, or as needed [estimated total of 120-180 minutes]
  • Currently open to global participation 
  • Follow the provided Hope for HIE Care Committee Writing Guidelines
  • Communicate regularly with the committee about progress with the program
  • Write uplifting messages to families in provided cards and mail them back to Hope for HIE (our fulfillment center will include these cards in hospitalization support packages. No stamps needed!)
  • As a donation to Hope for HIE and this program, you will be responsible for the cost of sending back the cards — in bulk– to Hope for HIE (current estimation is less than $15 a year)
  • Maintain confidentiality of participants in the program and follow privacy best practices
  • Keep track of supplies and work with foundation staff to communicate program needs

PROGRAM STATUS: Open

Apply Now

Loss Support

As a branch of our Care Committee, Loss Support Card volunteers receive branded notecards to write supportive + sensitive messages to families experiencing an HIE-related loss. These will be included in our Loss Support Packages, along with a loss commemoration card and forget-me-not token of remembrance.

Responsibilities:

  • 20 cards a year, or as needed [estimated total of 90-120 minutes]
  • Currently open to global participation 
  • Follow the provided Hope for HIE Care Committee Writing Guidelines
  • Communicate regularly with the committee about progress with the program
  • Write sensitive, appropriate messages to families in provided cards and mail them back to Hope for HIE (our fulfillment center will include these cards in the loss packages. No stamps needed.)
  • As a donation to Hope for HIE and this program, you will be responsible for the cost of sending back the cards — in bulk– to Hope for HIE (current estimation is less than $15 a year)
  • Maintain confidentiality of participants in the program and follow privacy best practices
  • Keep track of supplies and work with foundation staff to communicate program needs

PROGRAM STATUS: Open

Apply Now

Friendship Bracelets

We are in our friendship & love era!

Want to spread friendship and hope? Make some friendship bracelets with Hope for HIE and hopeful phrases on them and mail to:

Hope for HIE
PO Box 250472
West Bloomfield, MI 48325

We will include them in our newly diagnosed support packages, SuperSibs kits, Growing Up with HIE program, and more!

Questions? Contact Us

Awareness & Support Opportunities

Peer support and awareness are cornerstones of our global community. We have many different opportunities throughout the year to be involved in different ways, both in organized roles and as a part of our global awareness campaigns.

Hospital Ambassadors

Hope for HIE Hospital Ambassadors are HIE parents who are familiar with the HIE NICU/PICU experience and who have a strong desire to build relationships with NICU, PICU, and applicable pediatric and community resource providers to help connect newly diagnosed families to more resources and support, under the direction and mentorship of Hope for HIE’s social worker.

Responsibilities:

  • Work with Hope for HIE’s social worker to build relationships as a peer support conduit between assigned local NICU, PICU, and/or applicable pediatric and community resource providers and Hope for HIE.
  • Communicate with and offer support to families at local NICU/PICU centers, as requested/needed.
  • Work with Hope for HIE’s social worker to elevate and manage concerns relating to the mental health and well-being of families in the NICU or PICU
  • Complete and abide by Hope for HIE ambassador training modules.
  • Plan/facilitate local opportunities to connect with HIE families such as an annual playground meet up, parents night out, or Hustle for Hope event.

PROGRAM STATUS: We are currently accepting interest form responses (below). We will be selecting 5 sites to roll out in early 2025, with an additional 5-10 sites by the end of 2025. Programs will be prioritized by people who have previously volunteered with Hope for HIE including Hustle Hosts, have established local connections to the neonatal, neurology and family communities, and hospitals with current connections with Hope for HIE in support, advocacy or research.

Ambassador Interest Form

HIE Awareness Month Ambassadors

HIE Awareness Month Ambassadors are selected to showcase the diversity of families, geographic representation, experiences, and outcomes in the HIE community throughout the month of April as well as engage and elevate Hope for HIE’s global awareness campaign. 

Global ambassadors represent those living with HIE, extended family members, super siblings, and more. 

Responsibilities:

  • Be highlighted in Hope for HIE’s campaign: blog posts, day-in-the-life social media takeovers, video Q&As, and more!
  • Showcase the diversity of experiences and locations that represent our global community
  • Participate in any kick-off calls or collaborative group messaging to best connect and plan
  • Engage and elevate Hope for HIE’s global awareness campaign
  • Send templated outreach materials to local/national affinity groups (NICUs, other NICU support organizations, etc.) to encourage their participation in recognizing HIE Awareness Month
  • Boost posts by commenting on Hope for HIE’s social media

PROGRAM STATUS: Applications will launch in early 2024

Peer Support Mentors – HIE Families

Peer Support Mentors within Hope for HIE are experienced, compassionate, and thoughtful parent leaders who provide emotional peer support to newly diagnosed families.

Leaning on their own personal experience and specific peer support trauma-informed training provided by Hope for HIE, the Peer Support Mentor aims to serve as a helpful point of contact for families.

1:1 Peer Support Mentor Responsibilities:

  • Personal experience with Hope for HIE’s support network is required. 
  • Build interpersonal connections with anywhere from five to seven assigned peer mentees at a time.
  • Interaction and leadership in the New to HIE support forum on Facebook.
  • Use Hope for HIE-assigned email to communicate with mentees and Hope for HIE leadership.
  • Complete and abide by Hope for HIE peer support, trauma-informed care training modules 
  • Monthly check-ins with the social worker to monitor the progress of the program and problem-solve any issues
  • Regular check-ins with program leaders and other mentors to connect.
  • Ability to work both independently and in teams.
  • Ability to think proactively, address problems creatively, and appropriately take initiative.
  • Ability to maintain confidentiality and professionalism as an ambassador for the organization.
  • Promptly elevate safety concerns to Hope for HIE’s social worker.

Peer Support Mentor On-Call Responsibilities:

  • Providing situational support and guidance during designated “office hours” once a month for upwards of a year.
  • Working with Hope’s social worker, Haley, to match with a mentee for a one-off call as they arise. 
  • Interaction and leadership in the relevant Hope for HIE support forums on Facebook are appreciated but not required.
  • Use of Hope for HIE-assigned email to communicate with mentees and Hope for HIE leadership.
  • Completion of Hope for HIE peer support training modules and willingness to abide by them.
  • Quarterly check-ins with the social worker to monitor the progress of the program and problem-solve any issues
  • Ability to work both independently and in teams.
  • Ability to think proactively, address problems creatively, and take initiative appropriately.
  • Ability to maintain confidentiality and professionalism as an ambassador for the organization.
  • Elevation of safety concerns within a timely manner to Hope for HIE’s social worker.
  • Demonstrated excellence in organizational, written, and verbal communication skills.

PROGRAM STATUS: We are accepting applications for mentors who represent the diverse people and needs of our community.

Peer Support Mentors – New to Loss

Peer Support Mentors within Hope for HIE are experienced, compassionate, and thoughtful parent leaders who provide emotional peer support to families facing loss from HIE, either in the newborn period or in childhood.

Leaning on their own personal experience and specific peer support trauma-informed training provided by Hope for HIE, the Peer Support Mentor aims to serve as a helpful point of contact for families.

1:1 Peer Support Mentor Responsibilities:

  • Personal experience with Hope for HIE’s support network is required. 
  • Build interpersonal connections with anywhere between five and seven assigned peer mentees at a time
  • Interaction and leadership in the HIE loss support forum on Facebook.
  • Use Hope for HIE-assigned email to communicate with mentees and Hope for HIE leadership.
  • Complete and abide by Hope for HIE peer support, trauma-informed care training modules 
  • Monthly check-ins with the social worker to monitor the progress of the program and problem-solve any issues
  • Regular check-ins with program leaders and other mentors to connect.
  • Ability to work both independently and in teams.
  • Ability to think proactively, address problems creatively, and appropriately take initiative.
  • Ability to maintain confidentiality and professionalism as an ambassador for the organization.
  • Promptly elevate safety concerns to Hope for HIE’s social worker.

Peer Support Mentor On-Call Responsibilities:

  • Providing situational support and guidance during designated “office hours” once a month for upwards of a year.
  • Working with Hope’s social worker, Haley, to match with a mentee for a one-off call as they arise. 
  • Interaction and leadership in the Hope for HIE loss support forums on Facebook are appreciated but not required.
  • Use of Hope for HIE-assigned email to communicate with mentees and Hope for HIE leadership.
  • Completion of Hope for HIE peer support training modules and willingness to abide by them.
  • Quarterly check-ins with the social worker to monitor the progress of the program and problem-solve any issues
  • Ability to work both independently and in teams.
  • Ability to think proactively, address problems creatively, and take initiative appropriately.
  • Ability to maintain confidentiality and professionalism as an ambassador for the organization.
  • Elevation of safety concerns within a timely manner to Hope for HIE’s social worker.
  • Demonstrated excellence in organizational, written, and verbal communication skills.

PROGRAM STATUS: We are accepting applications for mentors who represent the diverse people and needs of our community.

Questions? Contact Us

Education & Development Opportunities

Hope for HIE is dedicated to building accessible, vetted educational resources for the global HIE community, and continue to build sustainability for the organizational programming and resources by strategically building sustainable funding. We have several opportunities to make a difference and help ensure our families have access to educational and support resources.

Translation Committee

This committee aims to make Hope for HIE’s educational materials inclusive and accessible to HIE families worldwide. Volunteers offer their fluent-language skills to translate preexisting materials, build health information literacy in first use language, and ensure Hope for HIE’s global needs are met as elevated by its members.

Responsibilities:

  • Access to technology and familiarity with CANVA, a user-friendly web-based program, and Google Drive. 
  • Reading and writing fluency in English and at least 1 other language.
  • Complete translation jobs within the established timeframe.
  • Ability to choose from [and complete] various translation tasks, from small educational PDFs to larger learning modules.

PROGRAM STATUS: Open – ongoing

Apply Now

Grant Writing

Volunteer grant writers will research, draft, and submit proposals that align with and help fund Hope for HIE’s strategic plans and programs. They will collaborate with the Executive Director and Board of Directors to analyze financial needs and ensure the attainment of annual goals and sustainability.

Responsibilities:

  • Identify grants and draft grant applications that are aligned with Hope for HIE’s strategic plans and programs.
  • Familiarity with GrantStation platform is helpful.
  • Previous grant-writing or proposal-writing experience is helpful.
  • Demonstrated ability to write clear, structured, and persuasive funding requests.
  • Possess strong editing and proofreading skills with superb attention to detail.
  • Ability to prioritize and handle multiple tasks and independent projects simultaneously in a timely manner with minimal supervision.
  • Follow all branding and style guidelines related to the Hope for HIE brand and communications strategy.
  • Comply with all Hope for HIE values and always work toward our larger vision and mission

PROGRAM STATUS: Accepting volunteers – ongoing

Apply Now

Fundraising Ambassadors

Encourage various community groups, funders, and greater community to support Hope for HIE, helping the organization to raise critical funds to build programmatic stability and sustainability.

Share your story during the holiday appeal season, at corporate presentations, and other opportunities.

Responsibilities:

  • Professionally represent Hope for HIE to share the organizational story and your own personal story to encourage funding to be allocated to the organization.
  • Identify funding opportunities and work with Hope for HIE staff and Board of Directors
  • Follow all branding and style guidelines related to the Hope for HIE brand and communications strategy.
  • Comply with all Hope for HIE values and always work toward our larger vision and mission

PROGRAM STATUS: Open & Ongoing

Apply Now

Board of Directors

Our Board of Directors is always looking for interested and involved professionals to join our board in the following areas:

  • Professional Networking
  • Fundraising
  • Strategic Development
  • Corporate Communication
  • Family & Professional Outreach
  • Volunteer Management
  • Corporate Training

Responsibilities:

  • Steer the organization towards a sustainable future by adopting sound, ethical, and legal governance and financial management policies.
  • Ensure the organization has adequate resources to advance its mission.
  • Be an involved advocate for the organization, elevating opportunities that will help advance forward.
  • Bring the lived patient-family perspective to ensure the heart of the organization’s culture is represented in organizational priorities.

PROGRAM STATUS: Open & Ongoing

Apply Now

Medical Advisory Board

Hope for HIE’s Medical Advisory Board is a multidisciplinary group that provides insight, scientific direction, and expertise to the Foundation from leading academic and medical institutions around the world. The members of the Medical Advisory Board are recognized experts in treating patients, leading research on HIE, and developing best practices in treating HIE and supporting families in their respective disciplines.

Responsibilities:

  • Review Hope for HIE parent and family resources for accurate content
  • Support and provide input on the organization’s medical advocacy and research initiatives
  • Collaborate with Hope for HIE’s staff and Board of Directors to help move the organization forward to identify the best ways to support HIE families, and move forward the organizational mission.
  • Attend quarterly Medical Advisory Board meetings
Apply Now

Questions? Contact Us

Event Support Opportunities

Hope for HIE hosts many different opportunities for our global community to connect. These events are only made possible by the dedicated volunteers in our community who work to bring in-person experiences like family meet ups, playground events, retreats, fundraising and community support events. Volunteers work with Hope for HIE staff, who manages event logistics, to ensure events are positive, accessible and meaningful to those attending.

Hustle for Hope 5K Hosts and Event Volunteers

Is there a local 5K event being held in your area? If so, consider volunteering by assisting the Hustle Host in preparing for and running this event. See the list of local event locations here, then fill out the form below to express your interest and to be put in contact with the local host to begin your collaboration efforts.

Responsibilities:

  • Assist with pre-event preparations, including signage setup and participant check-in.
  • Help with on-site logistics during the event, such as directing participants, distributing water, and providing support at designated stations.
  • Aid in post-event activities, including cleanup, dismantling equipment, and organizing leftover supplies.
  • Serve as a friendly and helpful presence for participants, providing assistance and answering questions as needed.
  • Follow instructions from event organizers and coordinators, ensuring smooth execution of all volunteer tasks.
  • Uphold the values and mission of Hustle for Hope, fostering a positive and inclusive atmosphere for all participants.
  • Attend any volunteer training sessions or briefings provided by the event organizers prior to the event date.
  • Be flexible and adaptable to changing needs and circumstances during the event, working collaboratively with fellow volunteers and staff to ensure a successful and enjoyable experience for all involved.

Every April, Hope for HIE holds the Hustle for Hope 5K your way. What started as a virtual event has now grown to several in-person events hosted by volunteers in the HIE community.

These events are both community-building and fundraising events to support Hope for HIE’s mission and programming.

Responsibilities:

  • Work with Hope for HIE staff to pick a date, time, and location for a regional event.
  • Promote the event in your local community with local hospitals and other providers to generate interest, attendance, and sponsorship.
  • Attend any Hustle Host coordinating meetings.
  • Source local volunteers as needed and coordinate set up and tear down.
  • Adhere to any local rules, regulations, etc., per any signed contracts with Hope for HIE.
  • Act as a professional ambassador of Hope for HIE in your local community in accordance with the organizational values and mission.
  • Track and process any onsite donations, etc., with responsible accounting back to the organization.

PROGRAM STATUS: Open for 2024 Hosts

Apply Now

Regional Event Hosts

Regional Hosts work with Hope for HIE staff to plan and promote regional/local meetups, which aim to celebrate our connections as a large community and help members connect with other local families to spark long-lasting, supportive relationships. These can be whole family and community events, playground meet ups, parents night out events, or overnight family or parent meet ups.

Responsibilities:

  • Ability to work with Hope for HIE’s staff and other volunteers to pick appropriate, accessible venues to meet the needs of the attendees, within the scope of the organization.
  • Serve as the on-site professional representative and point of contact for vendors, attendees, etc. and elevate any concerns in a timely manner to Hope for HIE staff.
  • Willingness and ability to complete assigned tasks in a prompt manner (promotional outreach, agenda-building, vendor fulfillment, etc.)

Prior to Submission:

  • Potential venues should be researched, ideally with proposals or costs associated with them
  • 2-3 confirmed dates that work for the co-hosts and venues
  • Event dates at least 10-12 weeks out from an overnight event, and 6-8 weeks out from a daytime meet up.

PROGRAM STATUS: Ongoing

Apply Now

Biennial Mom Conference Planning Committee

Planning Committee volunteers help plan, promote, and improve the biannual Mom Conference Retreat, which aims to celebrate our connections as a large community, provide informational sessions on self-care, and help members process and connect with others to spark long-lasting connections in the HIE community.

Responsibilities:

  • You must be a good-standing Hope for HIE community member and a mother to a HIE child. 
  • Personal experience with Hope for HIE’s support network is required. 
  • Must have previously attended at least one Retreat 
  • Build interpersonal connections with up to ten assigned retreat members 
  • Interaction and leadership on the appropriate Hope for HIE social channels 
  • Ability to attend and contribute to monthly meetings leading up to the event
  • Willingness and ability to complete assigned tasks in a prompt manner [promotional outreach, agenda-building, vendor fulfillment, etc.] 
  • Room with the other planning members at event
  • [Optional, but encouraged]: Ability to fly in one day prior to the retreat to help with setup & event prep

PROGRAM STATUS: Closed (will reopen in early 2024)

Conference Booth Volunteers

Hope for HIE staff attends, participates and speaks at several conferences a year in an effort to move forward the advocacy and research side of the foundation initiatives.

It is our hope to have local families volunteer during these conferences to engage with conference attendees, share Hope for HIE key messages, and evangelize the Hope for HIE mission.

Responsibilities:

  • Professionally represent Hope for HIE at assigned time and location.
  • Attend virtual training for booth volunteers.
  • Be comfortable speaking about Hope for HIE’s mission, programming, services and advocacy messaging.
  • Engage with conference attendees, take down any contact information, and make notes to share back to Hope for HIE staff.

PROGRAM STATUS: Ongoing – check back for updates for specific dates and locations.

Questions? Contact Us

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