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Bill Fehon began making BBQ sauce from his own recipe in the early 1990s. Over the years, friends and family would ask for more sauce as soon as they finished up the bottle they received at the holidays.  As the demand for sauce grew, Bill started to think about making a business with his recipe.  Before Bill could realize the dream of selling his sauce, he was diagnosed with FTD.  Now, at 58 years of age, he struggles to recognize common foods or read simple words.  Bill can't make his beloved sauce because he can't follow his own recipe.

Determined to do something positive with Bill's diagnosis, his wife Diane and five sons took Bill's BBQ sauce recipe and made his dream come true-they sold their first bottle of Bill's Best BBQ Sauce in May 2011.  Since then, the family has gone through the process of USDA-certifying the sauce as organic, and more than 4,000 bottles have been sold on Amazon.com as well as 15 stores in the Philadelphia area.

The Fehon Family

While establishing the business of Bill's Best BBQ Sauce, the Fehon family decided that a greater good needed to come from their labor.  For every bottle of sauce sold, the Fehons donate 10% of the profit to AFTD. 

"It's important to my family and me to help raise awareness about this disease," said Diane.  "We've chosen to do this through our barbeque sauce.  Each bottle label tells the story of Bill, the sauce and the disease.  Our hope is that people will take the time to read the story and learn about FTD."

Please join the Fehon family in Fighting This Disease--make a contribution today to help AFTD move towards Care & Cure!

Rehabilitative Therapies Now Available for FTD Patients through Medicare

Have you been denied coverage for services such as speech therapy or physcial/occupational therapy because Medicare claims that there is no chance for improvement? If so, the settlement agreement in the district court case, Jimmo v. Sebelius, applies to you. According to the terms of a preliminary agreement filed on November 20, 2012, any Medicare recipient who received a final, non-appealable, denial of coverage based on the "Improvement Standard" prior to January 18, 2011 will be able to have their claims re-reviewed.

Often referred to as the "Improvement Standard case" Jimmo v. Sebelius was a class-action lawsuit to challenge an informal rule known as the "Improvement Standard" used to deny Medicare recipients coverage for any therapy or skilled care where there was no potential for improvement. For anyone with a progressive disease such as FTD, this rule amounted to a blanket denial of coverage despite the potential benefits of treatments such as speech-language therapy and physical or occupational therapies. In response to the lawsuit, HHS claimed that the "Improvement Standard" was not an official rule but rather a misapplication of existing rules. This means that going forward it is unlikely that any future claims from people with a progressive disease will be denied. For more information and tools to help appeal denials of coverage for skilled care, visit the website of The Center for Medicare Advocacy. 

At AFTD, we know that successful research costs a LOT of money, and we are still a relatively small organization.  So we have always taken care to invest our research dollars strategically: by partnering with the Alzheimer's Drug Discovery Foundation, who match our dollars 2:1; by investing in promising young researchers via a Postdoctoral Fellowship; and by awarding small pilot grants, which investigators can use to get enough data to garner funding from larger funders.  And this fall, we've had some nice news that demonstrates this strategy is working!    

• Todd Cohen, Ph.D., winner of the first AFTD Postdoctoral Fellowship (2009 - 2011), has been awarded a prestigious K99 award from NIH, which will provide five years of funding to transition him from postdoctoral fellow to an independent investigator in his own right.  Dr. Cohen is continuing his work with the FTD- and ALS-related protein TDP-43.
   
• Drs. Cosentino and Huey at Columbia University have successfully parlayed their 2009 AFTD pilot grant of $30,000 into a multi-million-dollar grant from NIH.  The award will provide funding for the next five years as they study the extent to which lifestyle characteristics such as diet, exercise, and substance use modify disease onset and course in a large family with a mutation in the tau gene.

These successes emphasize the importance of everyone in our community:  the researchers who do high quality work, the patients and families who participate in the research, and the donors who underwrite the cost.  AFTD is honored and pleased to be able to bring all of these players together to achieve our goals of efficient diagnosis and effective treatment of FTD.  Thank you!

Celebrate Valentine's Day "With Love!" AFTD will host its 2nd annual online fundraising campaign called "AFTD's With Love Campaign 2013." Just like last year, supporters can create a "With Love" fundraising page to tell their own FTD story and engage their circle  of family and friends in supporting AFTD. It's a great way to celebrate Valentine's Day and honor loved ones. The campaign will be introduced in mid-January, but in the meantime, start writing your "With Love" letter. If you'd like to participate in the campaign with your own fundraising page, please email fundraising@theaftd.org to receive information about when  and how to post your "With Love" letter in January!  And to add a little incentive, AFTD will give away four name-brand watches (donated by Fossil, Inc.) to the top fundraisers!

Can You Meet us Halfway?  AFTD seeks a donor to lead the campaign by providing a match for the monies raised through the 2013 "With Love" campaign!  We're hoping to raise $50,000 through the individual fundraising pages of "With Love," and it would be wonderful for those fundraisers to be able to tell their donors that someone else will be matching their gift dollar-for-dollar.  If you know of a company or individual who might be willing to make a match for all or part of our fundraising goal, please send an email to pmcgonigle@theaftd.org. Your support of this campaign makes our "With Love" stories even sweeter.

More information on grassroots fundraising can be found on our website...simply click here.

Kathleen Whalen lost her husband Pat of 38 years in April.  They had been together since they were 20 years old.  After a series of misdiagnoses and a progression of symptoms, Pat was finally diagnosed with FTD in July 2011.  One week after going into Hospice, Pat passed away.  These are Kathleen's words of wisdom for those dealing with FTD:

Pat Whalen

"Never give up.  Do not hide the FTD from

anyone--be open and outright, and take care of yourself.  As a wife, being with my husband when he passed was a blessing.  I am thankful we spent our early years traveling together across the country and at the family home in Downeast Maine.  Don't be hard on yourself.  Let your loved one make the decision when it is time for him/her to pass on." 

If you have Words of enCOURAGEment that you would like to share in upcoming issues of The Gateway, please email them to amaher@theaftd.org with "words of encouragement" in the subject line.