The FTD Disorders Registry, the first-ever online registry designed to bring together persons diagnosed with frontotemporal degeneration, their caregivers and family members, has officially launched. Accessible at ftdregistry.org, the Registry gives people affected by FTD the opportunity to teach researchers about the various FTD disorders by securely sharing their stories, thereby informing their work toward developing treatments and, ultimately, a cure. In return, Registry participants will receive recruitment notifications for upcoming clinical studies as well as research news updates. AFTD and the Bluefield Project to Cure Frontotemporal Dementia co-founded the registry with generous support from the Rainwater Charitable Foundation’s Tau Consortium program. For more information, visit ftdregistry.org.
FTD in the News
In a March 17 letter (pdf) to four key members of Congress, AFTD Executive Director Susan L-J Dickinson spoke out against a bill that would require employees to divulge genetic information before joining employee wellness programs. The Preserving Employee Wellness Programs Act (H.R. 1313), if passed, would “impose harsh new penalties on employees who refuse to make this private [genetic] information public to their employer.” As Dickinson points out in her letter, genetic mutations are the likely cause of an estimated 15 to 40 percent of FTD cases. “While it aims to expand workplace wellness programs to improve public health outcomes,” Dickinson writes, “this legislation would significantly undercut patient privacy protection for employees at high risk for workplace and societal discrimination given the nature and severity of their illnesses or risk of illness.” Read the whole letter here.
The story of Andy Nissen, a Texas veteran who was diagnosed with FTD at age 37 and died last year, emphasizes the need for more widespread awareness of the disease, argues a newly published article in WAG Magazine. In the article, Andy’s wife, Shana, recalls how difficult it was to secure an accurate diagnosis; some doctors even told Andy that he was fine. “FTD is commonly misidentified as Alzheimer’s, depression or even a midlife crisis,” AFTD Executive Director Susan L-J Dickinson is quoted as saying. “You can’t cope with a disease if you don’t know you have it.” Read the full article on the WAG Magazine website.
A researcher at the Gladstone Institutes in California has been awarded an $11 million grant by the National Institute of Neurological Disorders and Stroke to study the link between tau, a protein that naturally occurs in the human body, and the development of frontotemporal degeneration. Li Gan, PhD, a senior investigator at the Gladstone Institute of Neurological Disease, will use the grant to launch a three-part project investigating the ways in which neurons mishandle tau, and whether the resulting neuronal dysfunction may contribute to FTD. Dr. Gan will use stem cells derived from people with FTD to conduct her research.
As reported in Twin Cities Business on November 23rd, a team of researchers has patented a drug treatment that stimulates the production of progranulin (PGRN), a protein necessary in maintaining the health of the brain’s frontal and temporal lobes. Deficiencies of PGRN have been linked to both FTD and ALS. The researchers — led by the Mayo Clinic’s Rosa Rademakers, who received the Potamkin Prize earlier this year — also patented a benign virus designed to deliver the drug to the brain.