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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.

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.

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.

Connie Kunkle Memory Walk and Celebration of Life

Connie Kunkle, recently 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 loved one who is or has suffered from dementia or any illness or condition.

All event proceeds will benefit AFTD’s With Love campaign. Please click here to visit the campaign page created in memory of Connie. Additionally, eight restaurants around Lake Eola are participating in a “giveback night” on the Friday of the Memory Walk. A percent of each bill that mentions the Memory Walk will be donated to AFTD. Please see the details below for more information on the events.

Memory Walk:

Celebration of Life:

Participating Restaurants:

  1. Relax Grill at Lake Eola
  2. Mucho Tequila and Tacos
  3. Eola Wine Company
  4. Dexter’s of Thornton Park
  5. Soco
  6. 301 Lakeside
  7. Baoery Asian Gastropub
  8. Shari Sushi Lounge

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

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.