About my Fundraiser
We all have moments when life as we know it takes a turn – for better or worse.
Tuesday, August 3, 2009 was that day for me and my family. At 65, my dad – my mentor and hero – was diagnosed with a terminal illness – Frontotemporal Dementia (FTD).
Aside from the disease that will ultimately take his life, he was a very healthy and active individual – always on the go. Two-and-a-half years ago, I couldn’t even speak about what was happening to him, even with my closest friends. Daily I questioned, “How could this be happening to us?”. I was so determined to tackle this on my own, thinking that with my experience and connections in pharmaceuticals, I could ultimately save my Dad and others suffering from this horrific disease. Much to my dismay, while there is a tremendous amount of research being done, mainly on Alzheimer’s disease, which is different than FTD, a cure does not exist today. Every new discovery brings us all closer, but there’s so much more that needs to be done.
Feeling helpless is hard – very hard, especially when it means losing a parent sooner than you thought you would in life. While I may not be able to ultimately help my father, I want to honor him and make a difference with others who will one day encounter a fight against this same disease.
What is this disease?
FTD is a rare, but aggressive form, of dementia that affects people as early as 40, with no known cause or cure (www.theaftd.org). While many are quite familiar with Alzheimer’s, the most common form of dementia, few know about FTD, which progresses through the stages of the disease much more rapidly than other dementias. What differentiates the various types of dementias is what part of the brain is affected. Unfortunately, the result is all the same – it robs the patient of his dignity, quality of life, lifetime of memories, relationships with family and friends, the ability to enjoy the things that once bought so much happiness, and eventually the ability to recognize the ones he loves most. My biggest fear is the day when my Dad no longer knows who I am.
The past few years can definitely be described as one of life’s “ultimate journeys.” My family and I make the most of the time that we have left with my Dad, but we often find ourselves filled with feelings of pure sadness and helplessness. There are so many people in our lives who will never know our father as we once did, and so many more special moments in life that he won’t be there to experience and share in. We are living on memories of the family camping trips, holiday celebrations, and the many road trips we took up and down the Eastern seaboard. One of my most favorite memories of him is waiting for him to come home from work, so that we could play “catch” in the backyard. I was one of three girls that played Little League, and I was determined to be as good as he was! He loved softball and was still a sought after player with the younger guys as we grew up.
Being in the present moment is the only place to be. I see life in such a different perspective than I did before my Dad was diagnosed. If there is one positive thing I can take from this experience – it is to truly live in and embrace the moment – I know this is what my Dad would want for us.
How You Can Help
I’d like to honor my Dad and all those suffering from this disease by raising awareness and funds for FTD. My hope is that one day, no family will have to endure what my family has.
It’s known that I have a passion for sports, athletics and the outdoors. I attribute my athleticism to my Dad and that is why I will take on a series of athletic endeavors in honor of my Dad. Here is a summary of what I have scheduled so far:
March – NYC ½ marathon -- SUCCESS!
April – Base Camp of Mt Everest (over the course of 15 days, I will hike to over 17,000 feet to one of the world’s most peaceful and breathtaking places on earth) -- SUCCESS!
July – NYC triathlon -- SUCCESS!
Sept – Nation's triathlon (DC) -- SUCCESS!
October 21 – Army 10 miler (DC) -- SUCCESS!
November 4 – NYC marathon -- CANCELLED due to Hurricance Sandy
June 23 – Mt Tremblant Half Ironman (Canada) (1.2M swim, 56M bike, and 13.1M run) -- SUCCESS!
July 14 – NYC triathlon -- SUCCESS!
Sept 28 – Hamptons 1/2 marathon -- SUCCESS!
Oct 20 – Army 10 miler (DC) -- SUCCESS!
Nov 3 – NYC marathon -- SUCCESS!
June – Mt Tremblant Half Ironman (Canada) (1.2M swim, 56M bike, and 13.1M run)
Aug – NYC triathlon
My commitment is to raise $50,000 for The Association for Frontotemporal Degeneration (AFTD) to create awareness about FTD, to find effective treatments, and ultimately a cure. While this is my vision, I can't do this alone, and know that together we can fight this and make a difference in the lives of so many people.
I promise that I will put forth all the effort necessary – physical and mental – to do the training, push through the pain and make the sacrifices to successfully complete all the endurance events. Please know that no donation is ever too small, and every dollar makes a tremendous difference.
From the bottom of my heart, I thank you for your continued support and friendship. I couldn’t do this without you, and together we will make a difference!
I will keep you updated on my Dad’s condition – and my training.
For more information on FTD or questions about my efforts, please contact me at firstname.lastname@example.org
Thank you for all of your past comments!
Thu Sep 06, 2012 - Kristina DeMoura-Diaz
Deanna, you and your Dad are an inspiration to me and my family. Your fortitude on this journey is remarkable and your Dad is blessed to have such an incredible daughter. It is an honor knowing you. God bless you as you complete the last part of this journey.
Fri Aug 10, 2012 - Deborah Elitzur
What you are doing is wonderful! I am thinking of you and your family. Best wishes and good luck with everything!
Sat Aug 04, 2012 - Gayle Smith
My sister at age 64 has just been diagnosed with FTD. She had a stroke 3 years ago but not linked to this new disease I have been told. Right now feeling very helpless as I live across the country from her. This is the first site I have seen that someone is actually doing something to raise money. Please allow me to contribute. Good luck in your endeavors ...your dad would be so proud.
Mon Jul 23, 2012 - Claudy Jules
Deanna: For as long as I have know you, you have been fighting a good fight for a cause you believe in. No cause is greater than that of family! You continue to be a model to us all. - Claudy
Mon May 14, 2012 - Beena Lambrou
Deanna-I was touched by your story and feel so inspired by your words of staying focused on the present. What you are doing is so incredible to honor your dad and this type of love and passion will continue to effect many more people along the way...Enjoy your journey:)
Thu May 10, 2012 - Diane Munch
I am so impressed with all that you're doing - it is so inspiring. I wish you all the success in the world and will keep your family in my prayers. xo - Diane Munch
Wed May 02, 2012 - Ben Valasek
great job deanna.....very cool what you are doing.
Mon Apr 09, 2012 - Jennifer Collins
What a wonderful way to honor your father and give back at the same time. So inspiring. Wishing you lots of success in all of your endeavors! You and your family will be in my prayers.
Fri Apr 06, 2012 - Stephanie Gallo
You are an amazing daughter!!! Best of luck in Nepal, will be thinking of you :)
Wed Apr 04, 2012 - Terry Walter
You are not alone. Other such as the Walter Family are fighting everyday to find that treatment and cure. Keep the good thoughts and remember your dad that was and not what FTD had made him.
Mon Apr 02, 2012 - Bonnie Verses
You are amazing WOW such a special person!!
Sat Mar 31, 2012 - Eli Kumekpor
Deanna, you inspire me!
Mon Feb 27, 2012 - Christine DeRienzo
To you and your dad!
Sun Feb 26, 2012 - Dahlia Bouari
Deanna, I am so inspired by you and soooo proud of you!
Thu Feb 23, 2012 - Shari Adler
I think what you are doing is inspiring and I'm sure your family is really proud. I cant imagine how difficult the road has been since your dad has been diagnosed and your efforts not only directly help your family, but many others as well. Keep up the hard work.
Thu Feb 23, 2012 - Emily Shteinhauz
Way to go Deanna!
Thu Feb 23, 2012 - Daphne Chan
Deanna,What you are doing is amazing and terrific! I admire your spirit, drive, and love. I know you will reach your goal and wish you a safe journey through the various events.
Thu Feb 23, 2012 - Jennifer Brown
D-Your journey in this amazing endeavor is so honorable and touching. WOW!
Wed Feb 22, 2012 - Debra Sangiuliano
Wishing you all the success. I know you will reach your goal. Your dad would be honored and so proud of you.