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Comstock Respite Grants
Grants through the Comstock Caregiver Respite Program help full-time, unpaid caregivers arrange short-term daytime or overnight care for loved ones diagnosed with FTD. Caregivers decide how to best use the funds based on their situation and needs.
The maximum annual grant is $500. There are few requirements other than having a loved one who has a documented diagnosis of FTD.
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What's New |
Seminar for Teens/Young Adults:
On Saturday, August 3, the Scaggs family will host a one-day seminar for teens/young adults entitled "My Parent has FTD" at Copper Ridge in Sykesville, MD from 2 - 4 p.m. The day will feature guest speakers Dr. Chiadi Onyike and Becky Rye of Johns Hopkins FTD Clinic. For full details or to reserve space, check out the seminar flyer.
FTD Caregiver Conference in NC:
Alzheimer's North Carolina will host their 3rd annual FTD caregiver conference on Tuesday, August 27, 2013 in Raleigh, NC at the McKimmon Conference Center. Dr. Bruce Miller of UCSF will deliver the keynote address. There is a block of rooms at a special rate at the Holiday Inn Express. A family caregiver social will be held the night before the conference. Click here for conference details and the family caregiver social information. For more information, contact Nancy Broadwell at 919-832-3732 or [email protected].
Food for Thought:
AFTD's first-ever national awareness-raising campaign takes places from Sept. 29 - October 6. To date, 21 supporters in 16 different states have signed up to host events. Join the movement! For complete details on Food for Thought, visit AFTD's website.
New Support Groups:
A new FTD support group has begun in Concord, NC by Alzheimer's North Carolina. Follow these links to AFTD's map of the United States and Canada and click on your region to find clinical centers, support groups and FTD-related events in your area. Know of a resource that is not listed there? Please let us know via [email protected], so we can share the information with others in your community. |
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Caregivers' Corner | |
First FTD Drug Trials Starting
Research centers in the United States have started to recruit patients for a study to evaluate the safety and efficacy of TRx0237, a new compound for the treatment of behavioral variant FTD (bvFTD).
While there is tremendous excitement in the potential for effective treatments, the process of developing drugs, testing them and bringing them to market is complex and slow. AFTD is here to educate and empower people to understand more about these studies. Visit these resources to learn more about clinical studies and what is involved in participation:
Webinar on FTD Clinical Trials
Susan Dickinson, AFTD Executive Director and Jill Shapira, Ph.D., RN presented training for FTD support group leaders on understanding clinical trials. The archived recording and materials are available on AFTD's website.
To listen to the archived webinar presentation, click here. Click here to download the slides and additional material.
www.ClinicalTrials.gov
This is the best source of information on approved clinical studies. You can search on words or phrases such as FTD, PPA or PSP to find current studies in that area. The listings include the title of the study, the types of patients who are eligible, a list of participating centers and the person to contact for more information. This is the link to the TauRx study in bvFTD.
Whether as a study participant, family study partner, research donor or advocate of research funding, each member of the FTD community plays a key role in advancing the science that will one day lead to a cure. |
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Medical Momentum |
AFTD Hires Full-Time Scientific Director
You know that old saying "Time flies when you're having fun?" Well, nothing could better describe my first three weeks here at AFTD as the new, full-time Scientific Director. However, I would also add that it has been challenging, exciting, rewarding and really busy. Interest in FTD-related research is steadily gaining ground. In 2008, approximately 147 research papers were published in the field; by 2012, that number had swelled to 443 publications. Here at AFTD, we saw the number of applications to our Pilot Grant program grow from 21 applications in 2012 to 40 applications for our July 1, 2013 deadline! Even better, we are attracting global interest in our pilot grants, with applications from across the United States, as well as Canada, Israel, Europe and Australia.
This steady climb in clinical and basic science research in FTD is truly encouraging as it lays the foundation for drug discovery and the development of potential therapies. We can see this research
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Dr. Nadine Tatton |
interest directly translated into clinical trials for new or repurposed therapeutics (see www.clinicaltrials.gov), which is good news for our patients and caregivers. Discovering and developing new therapies is a difficult path, but the more clinical and basic science researchers we can bring to the laboratory, the better.
As a newcomer to AFTD, I am in awe of the level of commitment that our patients, caregivers and healthcare professionals bring to raising awareness and advocacy for FTD. Attending my first AFTD Education Conference in Salt Lake City this past April allowed me to witness the courage and determination of those afflicted with FTD, their families and caregivers. I hope to meet more of you at next year's AFTD education conference in New York and learn how I can best support you.
--Nadine |
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The AFTD-Team | |
Upcoming Golf Events:
Help Josh Find a Cure for FTD Golf Outing: On August 2, Donald Pierce and a few friends will host a golf outing at 12:00 noon at Ruffled Feathers Golf Course in Lemont, IL. The event will benefit AFTD's mission and will feature dinner, an auction and raffle. Don's son, Josh, has been diagnosed with FTD. For complete details on the golf outing or to sign up, visit www.HelpJoshFindaCureforFTD.org.
George F. Sidoris Memorial Golf Outing: On August 17, the 8th Annual George F. Sidoris Memorial Golf Outing will be held at the Lost Nation Golf Course in Willoughby, OH. Registration begins at 1 p.m. The format is a two-person scramble beginning at 2 p.m. with a shotgun start. A steak dinner with raffle and awards will take place at 6:30 p.m. For complete details, visit www.gfsmemorial.com.
Quest for the Cure Golf Outing: AFTD Board Member Beth Walter will host the Walter Family Foundation's 6th Annual "Quest for the Cure" Golf Tournament on September 16, 2013 at the Del Paso Country Club in Sacramento, CA. To register or for complete details, check out the event brochure. This event fills up quickly each year.
Shoot 4 Scooter: After three years of hosting "Scoot 4 Scooter," the Scaggs family changes things up a bit this year with a "Shoot 4 Scooter" golf outing on October 20 at Penn National Golf Course in Fayetteville, PA. The shotgun start will be at 8:40 a.m., and registration opens at 7:30 a.m. A dinner and raffle will follow the tournament. For complete details or to register, visit www.scoot4scooter.com.
More information on grassroots fundraising can be found on our website...simply click here. |
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Words of enCOURAGEment | |
Follow Your Heart and Your Intentions
by Beth K
You have to follow your heart. Get as much information as possible and move with it. As long as your heart and your intentions are straight on, you're going to be okay. Sometimes caregivers have a hard time letting go and realizing how much they are doing for their loved ones.
Find time for yourself - it is what will keep you strong and focused.
If you have words of enCOURAGEment that you would like to share in an upcoming issue of the Gateway, please email them to [email protected]. |
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