TRANSFORMATIONAL PROJECTS

 
 

Leading a national CAREGIVER RARE DISEASE EDUCATION Campaign THAT MEETS THE COMMUNITY WHERE THEY ARE

Lennox-Gastaut Syndrome (LGS) is a challenging and heartbreaking rare disease causing severe, debilitating seizures in young children, often resulting in lifelong disability. The LGS Foundation has been a light in the dark for a community of caregivers seeking support, and science-based answers for their children. With no cure, education about potential treatments is critical for caregivers seeking to ease their child’s suffering.

With sponsor support, the LGS Foundation hired ADH Comms to:

  • Design and execute a cross-platform and email “Myth Buster” campaign to educate the community on specific treatment options and new research

  • Drive the community to more information on the Foundation’s website

  • Manage ad creation and budget allocation

  • Collect and analyze campaign analytics to measure impact

 

content & STRATEGY LEAD for RARE DISEASE Medical research foundation website redesign

A website for a medical research foundation is more than a place to inform. It should also be a dynamic go-to resource for the patient and caregiver community, and a functional tool for the organization to engage and communicate. The opportunity to entirely redesign DTRF.org (2022-2023) was a pivotal moment to refocus the community’s needs, leverage and repackage an immense amount of important information and media, and build an ongoing relationship with the community using the website as a hub.

To achieve these goals, ADH Comms:

  • Helped guide the organization through the process of establishing goals for this effort prior to kickoff

  • Contributed key input to the brand refresh process

  • Led and managed the DTRF content creation team while coordinating closely with the contractor handling the brand refresh and website redesign

  • Authored and edited many pages of site copy to clearly articulate complex and scientific information to site visitors

  • Evaluated and organized a decade of visual media, quotes, photos, and more

  • Created new key sections of the website, like the dynamic and searchable Video Library, the interactive Patient & Caregiver Stories page and submission form, the organization’s Strategy and Impact visual timeline, and the Newsroom

    RESULTS: Creation of a dynamic, multi-functional new website catering to multiple stakeholder audiences (patients, caregivers, physicians, researchers, donors, fundraisers, both newly diagnosed and veteran patients, etc.) with clear language explaining the disease, treatments, research efforts, updates, and the work of the Foundation. Additionally, the site provides multiple connection points to get involved, fundraise, raise awareness, and stay up to date on the latest in desmoid tumor news and information.

Visit DTRF.org
 

SUPERCHARGING AWARENESS MONTH & CENTERING THE RARE DISEASE PATIENT EXPERIENCE

Prior to 2019, Desmoid Tumor Awareness Month was a small, patient-run effort on a small Facebook page. With sponsor support, The DTRF wanted to use their resources to elevate this grassroots concept and create a national and global campaign to highlight the impact of desmoid tumors. But awareness months are more than a chance to teach new audiences about a disease. They are an opportunity to empower and support an already engaged patient and caregiver population.

To establish the foundation-led version of Desmoid Tumor Awareness Month each September, ADH Comms:

  • Introduced a brand-aligned awareness month logo

  • Created a streamlined patient story and media collection effort

  • Introduced the organization to social media live streams, co-producing weekly, live educational and patient-experience events to meet the community where they are, working with physician experts, patient advocates, and sponsors to provide high-impact community value and support during the rare disease community’s most engaging and high-profile time of the year.

  • Created external partner participation tools, including a streamlined patient/caregiver story and media submission form, a multimedia partner toolkit, and a Facebook and Twitter profile frame, enabling stakeholders, sponsors, and the community at large to easily spread the word about this rare disease, the importance of giving/fundraising, and the invaluable work of the Desmoid Tumor Research Foundation.

    RESULTS: Reached ~140K over one month with a shoestring ad budget, collected 26+ patient stories and media to share during the awareness month and beyond to highlight the patient experience,

 

TRANSFORMING A RARE DISEASE FOUNDATION’S LARGEST ANNUAL FUNDRAISING EVENT INTO A “VIRTUAL” SUCCESS

The COVID-19 pandemic in 2020 created stunning challenges for nonprofits relying on in-person fundraising events, but ADH Comms also saw an enormous opportunity to engage more of the community in fundraising. In the midst of uncertainty, we quickly helped the Desmoid Tumor Research Foundation transform their largest annual fundraising event - the DTRF Running for Answers 5K - into the RFA Virtual Challenge, a summer-long call to the patient and caregiver community to use the power of social media to fundraise like never before.

ADH Comms collaborated with the DTRF to:

  • Design a multimedia social and email campaign that engaged the community in fundraising and created ongoing inspiration to draw in more Challengers along the way

  • Create the concept for Challengers to choose “#DistanceforDesmoids” mileage challenges (walking, rolling, running, hiking, swimming, canoeing, etc.), or their own unique creative challenges, and post regular progress updates to inspire donations.

  • Collect Challenger quotes and photos via a Challenger Facebook group with cheerleader energy to then transform and share via the DTRF social accounts and emails to inspire more community participation

  • Promote fundraising milestones along the way, featuring prizes to those who reached them and publicly acknowledging those who successfully reached the milestones

  • Ideate, design, and co-produce the first-ever RFA Virtual Ceremony live on Facebook, a celebration of all RFA Challengers with inspirational patient story videos, interviews, and inspirational guest speakers.

    RESULTS: The DTRF *surpassed* its $200K fundraising goal in a year when average household nonprofit giving was down, recouping essential funding lost from multiple cancelled in-person events. This virtual version of the event took place again in 2021, and a virtual Challenger component remained a permanent option for the next few years despite a move back to in-person events.