“Rare Revolution Magazine” Releases Article Series on FTD and Its Impact

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Rare Revolution Magazine, a UK-based digital publication dedicated to spotlighting rare diseases, featured seven articles focused on FTD awareness, research, and advocacy in its latest “Digital Spotlight” series.

The articles highlight the global impact of FTD, the ways that persons affected are navigating the experience, and the work being done to advance the science of FTD.

AFTD CEO Susan L-J Dickinson, MSGC, discussed in a featured article AFTD’s work on FTD advocacy and research. “AFTD advocates on behalf of those affected by FTD, working to educate policymakers that not all dementia is Alzheimer’s disease. We perform outreach and produce materials to educate healthcare professionals about FTD,” said Dickinson.

The series also includes an article on the FTD Disorders Registry’s work in advancing FTD research and the benefits of joining the registry. Dr. Dianna Wheaton, the registry’s director, said in the article that the Registry was designed to bring together everyone affected by FTD, including “individuals diagnosed, their family members, caregivers and friends, as well as clinicians, scientists, patient advocacy groups and the pharmaceutical and biotech industry.”

Elsewhere, an article on gene therapy research summarizes how gene therapy works and what to consider when participating in clinical trials. The series also features articles on genetic testing and how undergoing testing can affect individual family members.

Former AFTD Board Vice Chair Debbie Fenoglio, a former FTD caregiver for her late husband, shared her story of how an FTD diagnosis impacts care partners.

“The most difficult part of caregiving for your loved one is watching the disease of FTD slowly rob them of who they were; they become someone you hardly recognize,” Fenoglio said. “There’s the pain of trying to hang on to the person you fell in love with as they slowly slip away.”

Read the full Rare Revolution Magazine “Digital Spotlight” Series on FTD here.

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