Share Your Stories, Advance FTD Science with the FTD Disorders Registry

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.

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AFTD to Congress: Reject Genetic-Information Bill

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.

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WAG Magazine Highlights Need for More Widespread FTD Awareness

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.

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FTD Calendar Benefiting AFTD

Sharon and Rod Hall of Georgia are creating an FTD focused calendar for 2018 titled: Celebrating Life with Family, Friends and Fun. The calendar will feature pictures of people diagnosed with FTD alongside their family and friends. All proceeds from the calendar sales will be donated to AFTD. Sharon is now accepting orders via this order form and calendars are expected to ship October 2017. Please send order form and payment to Sharon, not AFTD.

Note: This is not an AFTD calendar but an Independent Grassroots Fundraiser benefiting AFTD. AFTD sincerely appreciates Sharon and Rod’s support.

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Connie Kunkle Memory Walk and Celebration of Life

Connie Kunkle, best known for being an on-air host on Evine (formerly ShopNBC) was diagnosed with FTD in 2015 and passed away in 2016. Her closest friends and family have planned a Memory Walk and Celebration of Life in her memory centralized around a very special place to Connie, Lake Eola in Orlando, FL. All are welcome to attend the Memory Walk and walk in honor or memory of a love one who is or has suffered from anything, not just FTD. Please see the details below for more information on the events.

Memory Walk:

• Date: Friday, February 24, 2017
• Time: 6:00 – 7:00 pm
• Location: Lake Eola (Orlando, FL)
• Click here to view the event flyer.

Celebration of Life:

• Date: Saturday, February 25, 2017
• Time: 3:00 – 4:30 pm
• Location: Downtown Baptist Church (120 East Pine Street, Orlando, FL 32801)
• Click here to view the event flyer.

Contact AFTD’s Grassroots Events Coordinator, Bridget Graham with any questions: bgraham@theaftd.org

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AFTD Employment Opportunity: Chief Financial Officer

AFTD is recruiting for a newly-created Chief Financial Officer position. Please share widely this opportunity to play a pivotal leadership role in the organization’s work to drive research to a cure, and improve quality of life for all affected by FTD.

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Imperfectly Perfect Jewelry and With Love

Not long after her mom was diagnosed with FTD in 2014, Wendy started designing and making fashionable yet functional medical bracelets to help with communication issues common to the disease. Imperfectly Perfect Jewelry will be participating in With Love this year, in a special way. During the month of February, Imperfectly Perfect Jewelry will donate $5 to AFTD for every piece of jewelry purchased. Please click here to shop.

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Running the Chicago Marathon for Laura

Daniel Ranti is running in the 2017 Bank of America Chicago Marathon on October 8, 2017 in honor of his mom, Laura who has FTD. He is fundraising on Crowdrise to benefit AFTD in the months leading up to his race. Dan has already raised more than half of his $5,000 goal with the help of his generous supporters! Please click here to view his fundraiser and follow his story as he prepares to run 26.2 miles to #endFTD.

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AFTD Awards $2 Million to Advance Biomarkers Research Targeting Young-Onset Dementia

Doctors often rely on biomarkers – objective, easily measured biological features that indicate underlying pathology— to support accurate diagnosis and treatment efforts. Blood pressure, for example, is a widely-used biomarker for cardiovascular disease. Today, no comparable measures exist for FTD. The Association for Frontotemporal Degeneration (AFTD) aims to address these challenges with the award of $2 million to fund cutting-edge research into the discovery of FTD biomarkers.

After reviewing proposals from leading researchers worldwide, an expert panel has selected five researchers for multi-year FTD Biomarker awards. Recently released on PRNewswire, the full press release can be seen here.

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Calif. Researcher Receives $11 Million Grant to Study Tau-FTD Link

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.

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Researchers Patent Drug Treatment to Boost Protein Production in the Brain

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.

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Emerging Treatments Could Apply to Multiple Forms of Dementia

Researchers are hard at work developing treatments for FTD, Alzheimer’s disease and other forms of dementia, writes Dr. Howard Fillit, executive director of the Alzheimer’s Drug Discovery Foundation (ADDF), in a Nov. 22 Huffington Post article. Dr. Fillit briefly explains numerous other forms of dementia in the article, explaining that many share the same physical causes (including rogue proteins in the brain, impaired blood flow, and neuroinflammation). He highlights several researchers currently investigating promising treatments that target these causes. Among them are Dr. Mari DeMarco of the University of British Columbia and Dr. Keith St. Lawrence of the Lawson Health Research Institute in Canada, both of whom received 2015 Drug Discovery Grants from AFTD and ADDF to support their research.

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Mayo Clinic Researchers Patent Genetic FTD Test

Researchers have patented an innovative molecular test that can measure a genetic mutation linked to both FTD and ALS. Members of the Mayo Clinic’s Neurodegenerative Diseases Lab — led by Leonard Petrucelli, chairman of the neurology department at the clinic’s Florida location — received approval for the patent on September 20. The molecular test (also known as an immunoassay) is able to diagnose properties of the mutated gene C9ORF72, which causes the most common genetic forms of FTD and ALS. Dr. Petrucelli sits on the scientific advisory board of the FTD Biomarkers Initiative.

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Neurology Now Features Actress Kimberly Williams-Paisley

Actress Kimberley Williams-Paisley, whose mother passed away from PPA, is featured in the cover story of the October/November issue of Neurology Now. Williams-Paisley wrote a book about her mother’s FTD journey, Where the Light Gets In, published earlier this year (AFTD discussed the book with her this past April.) In the Neurology Now article, Williams-Paisley discusses the challenges she and her family faced while caring for her mother, the regrets she still feels about her mom’s final years and the importance of FTD education and awareness. Read the entire article here.

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Virginia Woman Shares Her FTD Story on WWBT-TV

Peggy Plagemen, a Virginia woman who lost her husband to FTD, shared her story with WWBT-TV (Richmond) in a segment that aired October 12. Peggy told reporter Sarah Bloom that Wayne, her husband of nearly four decades, began to exhibit “rather bizarre behavior” — a hair-trigger temper, a lack of concern for personal hygiene, a penchant for sneaking out of the house to see other women. Wayne’s strange behavior tore the couple apart. Finally, after multiple incorrect diagnoses, a doctor told Wayne he had FTD. He died a little over a year ago, and, Peggy told WWBT, “I’m still grieving for him.” Peggy, a veteran of AFTD’s Food for Thought campaign, said she shared her story to help raise awareness of FTD. You can watch the full story at the WWBT website.

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People Affected by FTD Share Their Stories in Op-Eds

To mark the second annual World FTD Awareness Week, two newspapers published op-eds written by people whose lives have been touched by FTD. On October 1, the Altoona Mirror in Pennsylvania ran an op-ed written by Cindy Odell, who was diagnosed with FTD five years ago. Odell maintains a blog documenting her FTD journey. Later, on October 6, the Delaware State News published an article by Eugenia Thornton, whose husband of 41 years has FTD. Thornton writes that her husband, a “career soldier [who] once was a leader of men,” is now almost completely reliant on the caregiving staff at the veterans’ home where he lives. Thornton writes that she marked World FTD Awareness Week by holding a Food for Thought event in Dover, Delaware.

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Food for Thought – Kansas

Host: Tam Smith
Date: TBD
Time: TBD
Location: Tam’s Home
Event: The host will be having a garage sale where snacks (and their recipes) and FTD educational and awareness materials will be available.
Contact: rsofan@aol.com

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Food for Thought – Louisiana

Host: Amy O’Bryant
Date: September 26, 2016
Time: 11:00 am – 2:00 pm
Location: Amy’s Home
Event: Selling lunches with information attached about AFTD and host’s mother-in-law to local refineries.
Contact: obryantamy@yahoo.com

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Food for Thought – Alaska

Host: Amber Parker
Date: October 6, 2016
Time: TBD
Location: Amber’s Home
Event: Open house.
Contact: amberp@linksprc.org

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Food for Thought – California

Host: Carmie Ibarra
Date: October 8, 2016
Time: 11:00 am – 9:00 pm
Location: Panda Express (415 W Felicita Ave., Escondido, CA 92025)
Event: The restaurant will donate 20% of all pre-tax sales during the date listed above to AFTD when a flyer is presented. Please contact the host for a copy of the flyer.
Contact: carmie_ibarra@yahoo.com

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