The Gateway
Issue #37                                                                                                 February 2018
In this issue of  The Gateway,   learn more about: AFTD's  2018 Annual Education Conference, how to get involved in our 7th Annual With Love Campaign , the benefits of joining a caregiver support group , upcoming  FTD-related events & volunteer opportunities , and other  recent news & happenings .
Care and Support CareAndSupport
Join  AFTD in Chicago for the 2018 Education Conference! AnnualEducationConference

AFTD's Annual Education Conference offers an unrivaled  opportunity to learn about FTD directly from the experts. This day-long event features presentations from leading clinicians in the field, interactive breakout sessions and unparalleled opportunities for face-to-face networking with others facing FTD.

This year there will be additional opportunities for people to network according to particular areas of interest or geographic region. Connect with attendees from your area of the country via informal lunch tables. Afternoon breakout sessions for people living with FTD, young adult care partners and healthcare professionals will facilitate connections between individuals looking to meet others with similar stories and backgrounds.

We hope you join us in Chicago on April 13 for the AFTD Education Conference. Visit the conference home page for more information, including how to register.
The AFTD-Team TheAFTDTeam
With Love 

AFTD's 7th Annual With Love Campaign is an opportunity to honor or remember a loved one affected by FTD by raising vital funds and spreading FTD awareness. 

Debbonnaire Kovacs of Kentucky is participating in the campaign this year in memory of her husband. Here's her story of love :
 
My husband, Les Kovacs, was a strong, creative, vital, loving man. He used to send me six valentines every year -- there would be a funny one, a romantic one, a few flowery ones... Once when he was traveling, we unknowingly sent each other the exact same valentine, which crossed in the mail so we received them the same day. I laughed till I cried. 

Les and Debbonnaire
So when he stopped caring about anything -- even me, or so it seemed -- I couldn't understand it. Although sometimes I feared he didn't love me anymore, in my heart I KNEW he did, so we started making the rounds of doctors. It took two years to get a diagnosis of FTD, and by that time I was making all decisions and running our lives alone.  For the next five years, I cared for him as he became a child, then a toddler, and finally a baby in a bed. 

FTD is significantly different from Alzheimer's, the dementia most people know more about. To the last day of his life, Les still knew who I was and was visibly reassured if I was nearby. He died with his hand in mine, loving me to the last beat of his heart. I will always miss my Valentine, so I am using the month of February as a time to raise awareness and funds to end this horrible disease.

If you want to participate in this special campaign, please create a fundraiser  or email Grassroots Events Coordinator  Bridget Graham to get started.
Words of Encouragement WordsOfEncouragement
A Caregiver's Journey
by Doris Booth, Texas 
 
Doris Booth
Dementia. When this word is uttered about a loved one, life changes forever. What is this strange disease? How will it change him or her, or me as a caregiver? How long will it take before institutionalization or death? What must I prepare for? Do I have the strength to cope?

These are questions every caregiver likely asks, if only to themselves.

Even in the upheaval of living with a loved one who has dementia, life management is possible. One can make this new life as a caregiver more bearable, finding joy and humor in small moments.  Most importantly, we must take care of ourselves if we are to care for our loved ones.

Joy and good humor are not always achievable. But if we seek the courage to face the disease even part of the time, it is worth it. 

Only caregivers can truly understand how it feels to deal with the constant daily dementia demands. Finding a safe, nurturing support group for yourself can be essential.  Here, you will discover you are not alone. Group members share your fears, frustrations and even your joys. 

We in AFTD support groups know you may want to cry or scream or give up or give in. But with a little help, you may discover you yourself will learn and grow through these challenges.

The Dallas FTD Support Group, which is affiliated with the Association for Frontotemporal Degeneration, meets at 11:30 a.m. the second Saturday of every month for a Dutch treat lunch at Celebration Restaurant, 4503 Lovers Lane in Dallas, TX. IT is open to caregivers of all kinds of dementia. Patients are not allowed to attend. Those who wish to participate can email the facilitator, Doris Booth, for more information and to be added to our meeting notices. 
Community Connection CommunityConnection
Upcoming Meet & Greets 

If you live in the vicinity of Salt Lake City, Seattle, or  Birmingham or Mobile, Alabama, please  join us for an upcoming AFTD Meet & Greet. These informal gatherings provide an opportunity to meet others in your area whose lives have been affected by FTD. All are welcome! To l earn more , click below to download the informational flier for the event nearest you:





Featured Volunteer Opportunity: Support Group Leader

Thought about volunteering with AFTD, but not sure where to begin? Becoming a support group leader is a way to provide others in your own community with help and hope. AFTD offers initial and ongoing trainings to prepare you to feel confident and comfortable in this role. Join a network of leaders across the country who are committed to raising awareness and helping others through a monthly support group. If becoming a support group leader interests you, click here to learn more. Then, contact your AFTD Regional Coordinator Volunteer to take the next step.

February 17th: Facility Outreach Volunteer Training 
 
Informing and educating residential care facility administrators about FTD and AFTD is an important and valuable volunteer role. You can join a team of dedicated volunteers and make an impact by conducting awareness visits at facilities throughout your local community. AFTD will provide you with training, resources and helpful tools to assist you in preparing for these brief educational visits.
 
The next AFTD Facility Outreach Training is scheduled for Saturday, February 17th at 11 a.m. (EST) and will be presented by one of AFTD's Middle Atlantic Regional Coordinator Volunteers, Sarah Sozansky Beil. Contact your Regional Coordinator Volunteer to learn more and register.

AFTD's Network of Support

AFTD offers ongoing training for affiliated volunteer support group facilitators. We are so grateful to all of you who are willing to share your time and talents to help provide caregivers much needed support and resources. Welcome -- we are honored to have you aboard!

We would like to introduce our newly affiliated support group facilitators:

Lisa Ficker
Detroit Area, MI
Shirley Gordon
Manchester, NH

Find information on local support groups here . Thinking of becoming a support group leader in your area? Learn more by contacting our Support Services Manager, Bridget Moran-McCabe, at  bmoran@theaftd.org  or 267-758-8653.    
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