Hyperacusis Central was launched 18 months ago in March 2022, and since its inception, we have made tremendous progress. So, in this article, we will talk about how we got started, what we have achieved, and where we are today.
We had humble beginnings, as the brainchild of three hyperacusis sufferers, who wanted to create a grassroots awareness platform where their stories could be shared. From there the outlet quickly branched out into also offering other sufferers the opportunity to share their stories, dabbling in videos related to hot-button issues in the hyperacusis community and blogging about the condition.
Initially, the only mediums of communication were a Blogger page and our YouTube channel. Over time, the social media reach gradually expanded. In July 2022, Facebook, Instagram and Twitter were added. Reddit and TikTok came later in February 2023. Finally, in May 2023 the Blogger Page was migrated to a full-blown website, hyperacusiscentral.org.
At the time of writing, these are some statistics:
- We have 15 patient testimonials
- Our website has 4.2k users
- We have 1185 followers on our social media channels
- Our YouTube channel has almost 500 subscribers and 1.6k monthly viewers
While Hyperacusis Central is a collective with fluid membership, the size of our contributor pool has steadily grown in unison with the social media audience and public notoriety. At present, the core contributor group (staff) of Hyperacusis Central sits at nine members, with additional members making up a subgroup called Friends of Hyperacusis Central, a crew of occasional contributors. This growth in membership has brought with it a diverse array of skill sets that have sharpened up our approach and broadened the scope of Hyperacusis Central’s endeavors.
We’ve begun translating our website into other languages to help reach non-English speaking sufferers across the globe. We’ve been able to take a more in-depth approach to researcher interviews. We have some forthcoming projects in the works that we hope will continue the mission set forth in our vision statement: To reform the public perception of hyperacusis and voice the needs of sufferers, in order to facilitate necessary accommodation in various sectors for those with the condition.
Through networking, we have developed many fruitful relationships. We have working relationships with two organizations that are mainstays in the hyperacusis space — Hyperacusis Research and the Hearing Health Foundation. They both now share our content on their social media pages, expanding our audience. In turn, we host fundraisers for Hyperacusis Research both independently and in conjunction with sufferers who post their testimonials on our site. To date, these efforts have helped raise over $1500 in donations towards biomedical research into hyperacusis.
We were able to come to an agreement with famous hyperacusis sufferer Noelle Foley, where she allowed us to share an edited version of one of her videos as a testimonial on our YouTube channel. This brought us new exposure outside of our standard audience.
Hyperacusis Central has also established relationships with several researchers. We’ve published interviews with both Dr. Emilie Cardon and Dr. Kelly Jahn, the latter of whom is now also our scientific advisor. We were very happy to hear both of them express that patient testimonials from our website have been important resources for their research efforts. We currently have several more interviews coming up, which we will publish in the coming weeks.
As you can see, we have been working continuously to strengthen our presence in the awareness space, grow our contributor pool, spread awareness in various ways, network with researchers and actualize our vision statement. We hope to continue taking the fight against hyperacusis to new heights.