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The Gateway
In This Issue
What's New
Caregivers' Corner
Medical Momentum
The AFTD-Team
Words of enCOURAGEment

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Issue: # 6
August 2012
What's New

8th Annual International Conference on FTD: Join AFTD in Manchester, England for the International Conference on Frontotemporal Dementias. The FTD conference will feature a welcome reception on September 5th and a one-day caregiver program (September 6th) directed to family members/FTD caregivers, both sponsored by AFTD.  Additionally, there will be a caregiver dinner on the night of the 6th to meet and connect with other caregivers.  Click here to view the conference flyer.  For more information on this conference, visit


AFTD Celebrates 10 Years:  Please join us on October 19 at the Pyramid Club in the heart of Philadelphia for AFTD's 10th Anniversary "Care and Cure" Event! The evening will include: cocktails, specialty food stations, silent auction and entertainment. Enjoy fine food from Susanna Foo, Plate Restaurant & Bar, Sansom Street Oyster House and other restaurants. Guests will enjoy wine, beer, and a selection of signature drinks. Details and ticket purchase opportunities are available on AFTD's website.


Save the Date: AFTD's Education Conference and Annual Meeting for 2013 will take place on April 12 in Salt Lake City.  The planning has just started, but stay tuned for details in early 2013!

Caregivers' Corner 

Ten Tips for Family Caregivers (courtesy of the National Family Caregivers Association)


While these tips  may not be specific to FTD, they are great reminders for those who daily give care but may forget to take a little bit for themselves.

1. Caregiving is a job and respite is your earned right. Reward yourself with respite breaks often.

2. Watch out for signs of depression, and don't delay in getting professional help when you need it.

3. When people offer to help, accept the offer and suggest specific things that they can do.

4. Educate yourself about your loved one's condition and how to communicate effectively with doctors.

5. There's a difference between caring and doing. Be open to technologies and ideas that promote your loved one's independence.

6.  Trust your instincts. Most of the time they'll lead you in the right

7.  Caregivers often do a lot of lifting, pushing, and pulling. Be good to your back.

8. Grieve for your losses, and then allow yourself to dream new dreams.

9.  Seek support from other caregivers. There is great strength in knowing you are not alone.

10. Stand up for your rights as a caregiver and a citizen.

Medical Momentum

FDA Legislation Will Benefit Drug Development in Rare Diseases like FTD


First enacted in 1992, the Prescription Drug Users Fee Act (PDUFA) allows the Food and Drug Administration to collect fees from companies seeking approval to market new drugs.  In return, the FDA is required to meet certain performance standards as described in the legislation. 

Since it was first passed, PDUFA has now been reauthorized three times and each reauthorization is an opportunity to include additional language directed at FDA activities.  The most recent reauthorization of PDUFA this summer proved to be a bonanza for the rare disease community with the addition of many provisions designed to make approval of drugs for less common diseases faster and more efficient, thanks to aggressive lobbying efforts by numerous organizations including AFTD.


Briefly, the new legislation authorizes more staff at the FDA devoted to reviewing new therapies for rare disease, emphasizes flexibility in the design of studies for rare disease and provides for greater interaction between the FDA and patient communities.  In addition, experimental drugs with very promising early data may be designated "breakthrough drugs" and receive accelerated approval.


AFTD supported the addition of several key pieces of this legislation, along with other patient organizations, in a June 11 letter to Senators Tom Harkin and Michael Enzi and Congressmen Fred Upton and Henry Waxman, who were involved in reconciling House and Senate versions of the bill.

In addition to the new provisions related to rare disease drug development in PDUFA V, the existing Orphan Drug Act has provided incentives to manufacturers to develop drugs for rare disease since its passage in 1983.   Researchers and companies developing new therapies for FTD should benefit from both pieces of legislation.  

The AFTD-Team

Joel McNulty will honor his father with the 2nd Annual Al McNulty Benefit for Dementia Research to be held at Paddy O'Shays in Overland, KS on September 15th.  The event willAFTD Team logo feature a silent auction, raffle and live music.  For more details, visit the event page on Facebook or contact Joel at [email protected].   

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

Words of enCOURAGEment

From Barry Vernick


barry vernickCaregiving: A Testament to our Humanness


My wife had FTD, and I cared for her every day for 2.5 years.  It was several years after she had passed away that I was able to resolve all the guilt and turmoil and sadness and regret.  Now, almost four years later, I feel grateful that I had the opportunity to take care of her and feel at peace with myself.  It is a long, hard process, but in the end, caregiving is a testament to our humanness, and it is a rare gift. 


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


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