It is critical that the public is aware of the remarkable progress in the field of stem cell research since the passage of Proposition 71: the California Stem Cell Research and Cures Act.
To achieve this goal, Americans for Cures is leading a “Report Back to the Public” communications effort to inform and engage the 7 million California citizens (59%) who voted in support of Proposition 71 of this progress. We have used different delivery mechanisms to reach the public through an online blog and social media, paid and earned media, patient advocate group networks, and opinion leaders.
Recruited a World-Class Scientific Advisory Board
To date, we have expanded the Americans for Cures Scientific Advisory Board (SAB) to include 25 of California’s leading scientists and physician-scientists. Fundamental to this expansion has been our work formalizing our relationships with California’s Centers of Excellence. These relationships have been sustained and deepened on the strength of regular in-person visits to Institutes, and consistent communication with all 22 California Stem Cell Research Institutes and Centers of Excellence. To ensure rigorous scientific accuracy of our public-facing materials, we have established a scalable, efficient protocol for vetting all scientific content with the SAB.
Recorded Milestones of Progress
We have the single, most up-to-date matrix detailing the 30 human clinical trials funded by Proposition 71 and CIRM. This list includes trials for Type 1 Diabetes, Breast Cancer, Sickle Cell Disease, Spinal Cord Injury, Age-Related Macular Degeneration (vision loss), HIV/AIDS, Heart Failure and many more. Monitoring and updating this matrix requires regular check-ins on progress with trials’ primary investigators at a level of detail and consistency that has previously been unmatched. Moreover, behind these 31 human clinical trials, there have been nearly 2,000 peer-reviewed, published discoveries from CIRM-funded research. These findings will support a broad pipeline of therapeutic candidates for subsequent rounds of human trials.
Launched Americans for Cures Ambassador Training Program
At its peak, the Proposition 71 coalition boasted the support of 100 patient advocacy groups and hundreds of scientific and civic leaders. To re-engage this coalition, we have identified our top patient advocate supporters to become Americans for Cures Ambassadors and have trained them on public narrative, public speaking, organizing, and mobilizing their disease advocacy communities.
“Proposition 71 freed us up from having to find money to look for our loved ones’ care, and instead allowed [sickle cell advocates] to be able to look out for and protect our community. Prop 71 and CIRM brought us back to our humanity.” – Adrienne Shapiro, Americans for Cures Ambassador, Sickle Cell Disease Advocate
The Americans for Cures Ambassador Training Program empowers patient advocates and equips them with the tools they need to conduct outreach in their communities, thus building our capacity to spread our message. Our ultimate goal is to build a network of Ambassadors from across California that are dedicated to helping us share the incredible impact stem cell research has had on their lives and in their communities. The trainings are also an excellent opportunity for networking between our advocates, who in many cases do not know each other, or have had limited interactions with each other. There are five main modules to the Ambassador Training: 1) Post-Prop 71 progress; 2) Developing a Public Narrative; 3) Building a Leadership Team; 4) Community Mapping and 5) Public speaking.
“Americans for Cures is the strongest defense I have in my hope for a treatment for Huntington’s disease.” – Frances Saldaña, Americans for Cures Ambassador; President, HD-CARE
Feedback from the trainings has been overwhelmingly positive; the wide range of backgrounds experiences and diseases represented has made each session a unique and moving experience for both trainers and participants. Ambassadors have already stepped up their engagement and are talking to their friends, families and other advocates, who have produced a number potential leads for future training sessions. Furthermore, a number of advocates with excellent leadership qualities have emerged, from compelling public speakers to skilled organizers; these leaders will no doubt be a critical part of our outreach efforts moving forward.
“California’s Prop. 71, the California Institute of Medicine means hope. The greatest stem cell program in America gives hope to all of us who yearn for cure.” – Roman Reed, President & Founder, Roman Reed Foundation
To date, we have had 14 patient advocates participate in and commit to our Ambassador training program, representing a range of diseases such as Type 1 Diabetes, Sickle Cell Disease, Spinal Cord Injury, Huntington’s disease, Parkinson’s disease and Heart Disease.
60,000+ Online Supporters
Using the latest online engagement tactics, we have recently re-launched our social media and website presence and have been aggressively appealing to supporters to join our community. In just the past few weeks, we used a mixture of organic engagement and paid advertising to build a user base now numbering more than 60,000 supporters on our social media channels) that we can then engage with regularly and covert their online interest to offline advocacy. Going forward, we are going to begin a Page Post Engagement effort on our social media streams that push targeted content (such as disease-specific Whiteboard videos, news articles of Milestones of Progress, infographics, et cetera) to “activate” supporters and mobilize them.
“Through Americans for Cures, I have a chance to fight the thing that hurts my son.” – Don Reed, Americans for Cures Ambassador; Author, STEM CELL BATTLES; Co-Sponsor, Roman Reed Spinal Cord Injury Research Act
Identified Key Moments in 2016
Working with patient advocates, scientists and civic leaders, we have developed a comprehensive calendar of key “moments” in 2016: conferences, public-facing advocacy events and more. We are continuing to solicit input from patient advocates and other members of our community of supporters to build out this shared calendar.
Scientific Education: Communicating to the Public
One of the chief objectives of the Report Back to the Public is to translate difficult-to-understand science into easily-digestible information. We have been working to create and distribute disease-specific content to effectively engage and empower patient advocacy groups and the public.
Through a partnership with Youreka Science, we have developed a series of digital “Whiteboard” videos to explain to non-scientists the progress being made in some of the most promising human stem cell clinical trials. that highlight advancements in stem cell research by disease. These Whiteboard videos highlight some of the most promising scientific breakthroughs in the areas of Type 1 Diabetes, Breast Cancer, Age-related Macular Degeneration (blindness), Sickle Cell Disease, Retinitis Pigmentosa and HIV/AIDs. Intend to produce 24-36 Whiteboard videos in 2016.
“Having given hundreds of talks that shares scientific knowledge to varied audiences, the Whiteboard is by far and away the best tool that I have seen. I know that people will learn, retain and be able articulate to others the information presented. It is also ideally suited for propagation via multiple social media paths, further expanding its utility by reaching more people with a consistent message in the most rapid way. In turn, these communications will be a boon to science and medicine… This awareness can then result in a better basis of knowledge when deciding if, how and when to support the next wave of advances.” – Mark Fischer-Colbrie, JDRF International Board Member
“I think people want to support science, advance medicine and have hope that they can be healthy as long as possible. Importantly, research in regenerative medicine is now moving faster than ever, with treatments and cures for many debilitating chronic diseases on the horizon. It is critical that the public understand the promise of current research and the Americans for Cures Whiteboard videos make the case beautifully.” – Brian Kennedy, President/CEO, Buck Institute; Member, Americans for Cures Scientific Advisory Board
Star Cluster Collaborative Stem Cell Research Maps
Institutionally, California’s stem cell institutes, stem cell centers of excellence, and stem cell specialty research centers, have each created extraordinary networks of resources which, in the aggregate, form a phenomenal and collaborative resource base stretching throughout the state. We have created a series of institution-specific, region-specific, and statewide “Star Cluster” pictographs to represent and map the strengths and collaborative relationships within each region, both before and after Prop 71. These Star Cluster diagrams are a valuable tool for illustrating the connections, collaboration, and resources of each institute’s stem cell research, pre-clinical capacity, clinical trial capacity, and international collaboration leverage.
Each of these institutes have created a Star Cluster of world-class talent that represent an entire ecosystem for driving progress from basic science to clinical trials to biotech delivery to patients through statewide and international collaboration. Thus far, we have completed maps for the San Diego region, UCLA, USC, Gladstone, UC Davis, UCSF, UC Santa Barbara, UC Irvine and Cedars-Sinai; we are finalizing diagrams for the remaining Institute Star Cluster maps.
