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Alexandre Bouchard

Alexandre Bouchard

June 22, 1983 - July 26, 2020

My beloved son died on July 26, 2020. Alex had always been gifted. He was a beautiful baby with dark brown eyes, a fast learner. He was somehow speeding every aspect of his life. He quickly learned langages, French, English and Spanish. He was good in sports as well, almost played scratch in golf, could easily beat the game in tennis and played remarkably well music instruments like guitar. He was gifted but most of all, Alex had a loving heart, full of compassion and empathy, with an E. He cared about sick and poor people. He also had a generous heart and over the years cultivated friendships. When he was diagnosed with FA at 21, he kept a joyful heart and fought the disease until the end. He suffered in his mind and body loosing all possibilities to play golf, tennis or guitars but he kept faith in a cure but above all, he kept faith in Jesus. In fact he had Jesus’s heart caring for the orphanage and needy people. He built a business on the net which made everybody proud of his accomplishments. Until the end he stayed in his condo and kept a close relationship with friends on the net. He was the perfect son, full of gratitude and love. I could not love him more. I had the privilege to be his father for 37 years and I enjoyed every minute spent with him. Today he is with the Saints, back home in heaven, he was and will be our angel. Love your for eternity Alex, Dad and Johanne.

Since his childhood, Alex has always been very close to his brother Antoine. They had always been like Siamese twins, wrapped in complicity, breathing for one another. Just 1 year and 10 days separated them. They always cared for each other, walking in the same steps all along his life, but Alex was leading in many ways. Their relationship was a pure expression of love. They have built a business together.

Planned Giving

Let your legacy help end FA

The Bartek Legacy Circle

The Bartek Legacy Circle, named for FARA’s Co-Founders Ron and Raychel Bartek, celebrates donors who support the future of FARA with a gift from their estate or a life income gift. If your plans include such a gift, please let us know. We would like to thank you, make sure we understand your wishes and welcome you into the Bartek Legacy Circle. The Bartek Legacy Circle members are also gratefully recognized in FARA's Annual Report.

There are many ways to include FARA in your planned giving:

  • Bequests
  • Charitable Remainder or Lead Trust
  • IRA Charitable Rollover (if 70 ½ or older)
  • Beneficiary Designations
    • IRA account
    • 401K
    • Life insurance
    • Donor Advised Fund

How to Join the Bartek Legacy Circle

If you are ready to help secure a future without FA, contact: Felicia DeRosa, VP- Fundraising & Communications,
484-879-6160   felicia.derosa@curefa.org

Naming Information for Bequests

To the Friedreich’s Ataxia Research Alliance ("FARA"), a not for profit, tax-exempt organization incorporated in the District of Columbia in 1998, having as its principal address 533 W Uwchlan Ave, Downingtown, PA 19335, and tax identification number EIN: 52-2122720, I [Name], of [City, State ZIP] hereby give and bequeath the sum of $___ or ___ percent of my estate for the general purposes of FARA.

FARA does not provide tax, legal, or financial advice. Please consult your own advisors regarding your specific situation.  
 

Starla Ann Brannon-Price

Starla Ann Brannon-Price

August 22, 1979 - February 26, 2019

Starla Ann Brannon-Price was born August 22, 1979, went to be with the Lord Tuesday February 26th 2019 at 39 years old.

Starla was Diagnosed with Friedreichs Ataxia in her late teenage years but didnt let FA stop her. She Graduated High School, went to college obtaining just short of a BA degree in business, wrote an article that was published by the National Ataxia Foundation(NAF), and in 2014 was Married. Starla loved God, Her Husband, Family, Friends, her dog Alex, and 2 cats Arnie and Jeffrey. she never let FA get her down, exercised daily, and watched what she ate... and watched out for her Husbands health too.

Many people remember her smile which would light up a room. she always smiled despite her circumstances with FA. She taught that it was better to laugh than cry. She also had Tremendous Faith in God and his son Jesus Christ and her life reflected that. Her favorite bible versus were "With God all things are possible" (Matt 19:26), and "I can do all things thru Christ who strengthens me" (Phillipians 4:13). Her life really reflected her faith... She was always positive, and strived be the best person She could be.

We mourn her loss but at the same time we have to keep on Advocating for others who suffer from the struggles because of Friedreichs Ataxia, and we will keep pushing on until we either find a cure or substantial treatment to help those who suffer from Friedreichs Ataxia.
- Starla's Husband, Daniel Price

Brenda Laurette Harrison

Brenda

December 26, 1951 - September 6, 2017

Brenda was was born in Columbus, Ohio. She grew up on our farm near Richwood, Ohio, She was active in 4-H and Essex United Methodist Church. She loved flowers and helped in the garden for as long as she was able. She was diagnosed with Freidreichs Ataxia in her early teens. Brenda attended North Union High School class of 1970. She then attended The Ohio State University in Marion. Brenda was one of the first students to live independently on The Ohio State University Campus, who used a wheelchair. Brenda acheived a Bachelor of Science in History at OSU. She was a devout BUCKEYE.

She was cared for in her Mother and Fathers home. Brenda outlived her original prognosis by 30 plus years, due to her Father and Mothers care. She always showed courage, compassion, and grace. She was kind and thoughtful to everyone. Brenda had her little dog Rose always by her side. Brenda was predeceased by her Mother Marylou Harrison in March 2007. Brenda is survived by her Father Robert Harrison, Richwood OH, sisters, Beth (Scott) Keith, of Kansas City MO., Marty (Lynne Kirby) Harrison, Powell OH, Barbara (Pat Gordon), Harrison, of Athens OH. Nephews: Drew Keith of Seoul Korea, Daniel Wasserman, Athens OH, Neice:Hanna (Keith) Sean Stephenson of Greely CO.

Loran Mackenzie Martin

Loran

January 15, 1987 - August 16, 2017

Written by Melissa Brunner, August 17, 2017...

My heart breaks along with the community of Burlington today as we learn of the passing of Loran Martin.

I met Loran through the Muscular Dystrophy Association and was immediately inspired by her desire to live and give. Honor her memory by being kind to those around you and finding joy in all you do.

Where to begin.

Many years ago, this breath of fresh air breezed into our MDA Telethon broadcast location. She might have been delivering a donation. I don't recall exactly. What I do remember is the bright smile, easy hug and infectious laugh.

As we spoke, she also admitted to a bit of anxiety and fear. Loran Martin had been diagnosed with Friedreich's Ataxia, and no one could exactly say what that would mean for her future. I'm sure Loran was upset with herself for letting a few tears slip out. She'd quickly brush them aside, the smile would return, and you could see the determination - the determination to live.

Friedreich's is a rare disease that attacks the muscular and nervous system causing problems that worsen over time. There is no cure.

But, it had never met Loran. We'd catch up each year at the telethon as Loran brought in her donations from her MDA golf tournament and the Coffey County Fill the Boot campaign (thousands and thousands of dollars over the years). She was so proud when she told me about the job she loved at the Burlington Recreation Center. In 2012 she invited WIBW to watch as community members came together to give her what any independent young woman would want - a home of her own! They built it just for her to accommodate her movement needs and the wheelchair she was using more frequently. Facebook has been a wonderful way to touch base and follow her smile as she lit up the world.

Today, that world is a bit dimmer. Loran passed away unexpectedly. Within hours her Facebook wall was flooded with messages from so many people who knew and loved her. They also raised a special flag outside the Burlington Recreation Center today. It features her beloved Kansas Jayhawks and the words, "Forever Loran".

Loran Flag

Loran was an inspiration to all who knew her and she touched more lives than she will ever know. The impact of her three decades on earth is immeasurable.

People like Loran are why we fight. For 17 years I spent my Labor Days alongside Ralph Hipp raising awareness of Friedreich's Ataxia and other neuromuscular diseases. The telethon may have ended, but the work of MDA does not. So many exciting things continue to happen because people like Loran are willing to live and fight and give every day.

Rest easy, my friend. Your work here lives on.

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