MEET OUR FA FAMILIES: Wes Gates and His Family

SURPRISE diagnosis

Diagnosed at the age of 13 years old, Wes Gates, now 34, has persevered through a string of challenges courtesy of Friedreich’s Ataxia (FA). Wes’ dad, Roger, was serving in the United States Air Force at the time and it was thanks to the medical personnel at Walter Reed Army Medical Center in Washington, D.C. that Wes was tested for FA in March 2001.

FA typically causes muscles to atrophy which in turn allows the spine to bend out of shape. Because of the degenerative effects of progressive scoliosis, Wes had to undergo spinal cord fusion, a major back surgery, soon after receiving his FA diagnosis in May 2001.

courage and perseverance after diagnosis 

Wes graduated from Fort Walton Beach High School in 2005 and decided to attend college at Northwest Missouri State University (NWMSU). Although he could still walk without assistance, Wes started using a wheelchair after he fell and broke his shoulder during the second semester of his freshman year. In 2012, after transferring to the University of Oklahoma (OU), he broke his ankle. By the time it healed, Wes had lost the ability to walk on his own. But he persevered, continuing to take classes full time at OU. At NWMSU Wes had originally wanted to be an architect, but as the FA progressed, he changed to Computer Engineering at OU. The handwriting required in the mathematics courses became impossible. After attending college off-again, on-again for eight years, Wes was ready to graduate. OU offered him the opportunity to earn a degree in Multidisciplinary Studies for which he lacked only a few humanities courses. Wes started taking film classes and fell in love with this area of study. In 2013, he graduated with a Bachelor of Science degree with an emphasis in Computer Science thanks to all his math/science credits.

For a time, Wes operated a film review website. An exciting highlight during that time was when a Major League baseball player from his favorite team, the St Louis Cardinals, followed his reviews. After a while, Wes could no longer provide reviews because typing became very difficult for him and eventually even using a voice translator stopped working because of the slurred speech pattern which is typical of FA’ers.

A Cautionary Tale

Since his spine surgery, Wes has suffered from chronic lower back pain and gradually became dependent on narcotic pain medication, despite only taking them as prescribed. These meds turned him into a zombie, always sleeping, and didn’t even relieve the pain; they just made him not care that he was hurting. After medical marijuana was legalized in Oklahoma, he decided to try it and applied for a license. Even with his pain doctor’s assistance with weaning himself off of the pain medications, Wes ended up in the hospital for five days while his body withdrew from the heavy amount of narcotic medication his body had become accustomed to taking for almost ten years. In the end, it was worth it because Wes can now manage his back pain more effectively with 2-3 doses of medical marijuana per day with zero narcotics. He is now more engaged and can better interact with friends and family.

A Typical Day

Wes wakes up early, watches TV shows like Morning Joe to keep up with current events, then streams TV shows or movies to pass the day until his dad gets off work. Thanks to Christin Haun, an FA Ambassador from Broken Arrow, OK who has lived with FA for about 40 years, the Gates family found out that Wes qualified for an OK Department of Human Services (DHS) program that either provides a home aide or pays family members to provide basic care (meal preparation, grooming, house cleaning, etc). As a result, after unsuccessfully being able to find reliable providers through DHS, Wes’ parents, Roger and Julie, perform these services that a home aide would typically provide and receive financial compensation.

The Need to Continuously Adapt

The Gates family converted a detached garage into private quarters with a living room, bedroom, bathroom, and small kitchen for Wes. They also turned the breezeway that once connected the garage to the main house into a room that contains an above-ground safe room for Oklahoma’s springtime ritual.

Going to the bathroom by himself had become a great source of frustration because of difficulty using a urinal. In April 2022, Wes underwent a short procedure to insert a catheter through his abdomen into his bladder. The collection bag only needs to be emptied once a day and his dad will eventually learn to change the catheter tube by himself once a month. So far the procedure has significantly increased Wes’ quality of life. 

Wes’ sister, Marie, bought him a red merle border collie puppy for his birthday in July 2020 with the goal of Haggie (named after Merle Haggard, get it?) becoming a service dog in addition to a faithful companion. Because of the Covid pandemic, they had to train Haggie themselves using video teleconferencing with an obedience trainer. Haggie knows important behavioral commands and can pick up dropped items for Wes. They are currently working to train Haggie to press a panic button (Ring doorbell camera) that will automatically call if help is needed.

Thanks to Wes’ ingenuity and computer literacy, he has talked his dad through the challenges of incorporating many adaptive technologies (e.g. Amazon Alexa) in his living area to control lights, door locks, the thermostat, and cameras/temperature control for his medicinal grow tent.

Lessons learned from facing the challenges of FA

Wes states, “Facing the challenges of FA has taught me to be adaptable because if you don’t adapt to the many obstacles, you’ll be miserable all the time. I do get frustrated and angry at times, such as when I drop something repeatedly. Yet, I tell myself that staying frustrated won’t help make it any easier. The current drug trials are for treatments to slow down disease progression, which is great for those just beginning the FA journey. My hope is that research will discover a treatment that can reverse my advanced progression and give me back some self reliance.”

Inspiration and Motivation

Wes experiences renewed motivation when attending FA events. Being around others with FA, who don’t let this disease stop them and who are determined to do the best they can, reminds him that he can do the same.

Favorite Quote

“Never trust a man in a wheelchair with dirty shoes.”​ ~ Ron Burgundy from Anchorman: The Legend of Ron Burgundy

MEET OUR FA FAMILIES: Olivia Francis and Her Family

When was Olivia diagnosed with FA?

Olivia, now a 3rd grader at St. Elizabeth Ann Seton, was diagnosed with FA Feb 2020 at 6 years old. FA seems to be more critical the younger the patient. Her mother, Mary, said that she suspected something was going on when Olivia was 18 months old but, FA being a rare disease, it took a few years to eventually be referred to the Mayo Clinic and receive the diagnosis. Because of her young age, Olivia cannot qualify for clinical trials but there is hope that at some point in the not too distant future, she'll be accepted into one. Mary stays informed via clinicaltrials.gov and through FARA's app.

What is a typical day like for Olivia?

Mary and Matt encourage Olivia to pursue her interests and not let FA limit her. They try not to be too hypersensitive while still being vigilant for Olivia’s welfare. At school, Olivia has permission to now take the elevator but she continues to take the stairs with the help of friends and faculty who have known her since she was 18 months old. Because her hand tires more, the school now allows Olivia to get help with handwriting her homework.

The wheelchair is now Olivia’s main mode of transportation when visiting the zoo due to the grounds being so large. Yet nothing will keep Olivia from her dance classes. Her love of ballet is more than just a passing fancy. The Nutcracker has been her favorite ballet since first seeing it at the age of four years old. Her mother, Mary, says she was mesmerized. She now attends the ballet as often as possible. Since starting classes at two years old, Olivia’s love of ballet has not waned. For the last three years, she attends weekly classes at Studio J, a faith-based dance studio. When the time comes Studio J’s owner said she is willing to bring in another teacher to assist Olivia.

​ In addition to ballet, Olivia attends free therapeutic riding classes at Coffee Creek Riding Center, a stable which has been providing hippotherapy to special needs children for the past 43 years. The mission of Coffee Creek is to help children with disabilities gain strength, coordination, balance, and self-image – utilizing the horse as a motivator in therapeutic riding classes. Because a horse’s walk mimics how a human walks, these sessions help strengthen the core which, along with ballet, could help Olivia slow down the progression of her disease.

Since receiving the FA diagnosis, who has inspired you to adapt and help olivia live life to its fullest?

The Gehrs have definitely inspired us. After receiving the diagnosis, local medical providers connected us with the Gehrs another local FA family who founded the Cure FA Soirée. Eric and Liz give their opinion but don’t force it on you. They have guided us and have embraced us. Their advice: “Don't just try to chase down a cure and spend time always going to doctors. Enjoy life with your daughter.” They are good people! We’ve been working on applying their advice and realize that, although their is no cure yet, the cure will come with enough resources. That’s what the Soirée is about…providing enough resources to FARA to fund the search for that cure.

Olivia, What are your hopes and dreams?

• ​To get rid of FA.

• Become a nurse like my mom.

• And, one day dance in The Nutcracker​.

Thank you from the Gehrs and the 2021 Cure FA Soirée

Thank you for supporting the 2021 Cure FA Soirée! It was an incredible success: our goal was $125,000 for FARA, and we've surpassed $150,000!!!

It's now online! See it all or watch parts, or rewatch your favorite acts:

2021.curefasoiree.org

See pictures and upload yours (whether you were in person or online, we want your pics):

pics.curefasoiree.org

It's not too late to donate (or by check, below):

give.curefasoiree.org

The in-person event was inspiring, alternating between live and recorded performances. With COVID, we wanted an audience of about 150 so we could spread the tables yet have a good crowd. We had 157 enthusiastic attendees!

We apologize for the live stream difficulties, and we appreciate you staying with us. We don't yet have numbers of viewers or states reached, but we were seen in five countries again!

If you watched online, please let us know where you were and tell us how many folks watched with you.

Cure FA Soirée Thanks You!!!

Thanks to all who supported the Cure FA Soirée by donating, sponsoring, watching, performing, speaking, and participating in the silent auction!!!

It’s not too late!

Donate Online

or see below to donate by check

As of today the Soirée raised $83,000 for FARA!

Friedreich's Ataxia Research Alliance

268 viewers - 25 states - 5 countries

With live streams and replays, 750 views of the show or parts thereof!

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Stay tuned for details on an Après-Soirée on Saturday, 01 August 2020.  If it's safe, Outback Steakhouse will cater a thank-you celebration at the Edmond Conference Center.

To donate by check, make it payable to FARA & mail to:

Cure FA Soirée
The Gehr Family
1109 Kingston Boulevard
Edmond, OK. 73034

States with Cure FA Soirée Viewers in red

Tell us if we missed yours!

Regards,

The Cure FA Soirée Team

Regina Banks, Maggie Darcey, Laurie Eaton, Emily Friedman, Eric Gehr, Liz Gehr, Michael Gehr, Patrick Hagelstein, Nicole Owens, Kelly Pearson, & Liz Sutton

Edmond Life & Leisure and The Oklahoman publish “Cure FA Soirée Seeks Sponsors” press release

Cure FA Soirée For Immediate Release
1109 Kingston Boulevard
Edmond, OK 73034
www.curefasoiree.org
info@curefasoiree.org 

Third Annual Cure FA Soirée Seeks Sponsors
Promote Your Company - Impact Our Community - See Unforgettable Performances 

Edmond, OK: The third annual Cure FA Soirée , a musical evening for all ages benefitting the Friedreich’s Ataxia Research Alliance (FARA), will be Saturday, 16 May 2020, at the Edmond Conference Center! Attendees will enjoy performances by accomplished local artists, stories and info about Friedreich’s ataxia (FA), dinner, drinks, and dessert, a silent auction and a wine pull, as well as opportunities to meet friends living with FA. 

Friedreich’s ataxia is a life-shortening, degenerative, genetic, mitochondrial disease, mostly affecting nerves and muscles. 15,000 people in the world have FA, usually diagnosed between 5 and 18 years of age. Balance and coordination problems often come first, followed by issues with fine motor skills, heart disease, and sometimes diabetes. Edmond resident, Michael Gehr, son of organizing committee leaders, Liz and Eric, was diagnosed with FA in January 2016. 

Outback Steakhouse, the Soirée’s first Platinum Sponsor, will cater the Soirée as a generous in-kind contribution. The organizing committee seeks additional sponsors for this exciting event! Four sponsor levels are available: 

Platinum Sponsor - $5,000
- 8 tickets at a reserved table in a preferred location
- Logo on invitation, tables, banner, program, social media, & website

Gold Sponsor - $3,000
- 8 tickets at a reserved table
- Logo on tables, banner, program, social media, & website

Silver Sponsor - $2,000
- 6 tickets
- Logo on banner, program, social media, & website

Bronze Sponsor - $800
- 4 tickets
- Logo on banner, program, social media, & name on website

So far the 2020 Cure FA Soirée has six other sponsors: Gold - Gehr Innovation Company; Silver - Cooper Auto Group; Bronze - COOP Ale Works, Dobson Technologies, OU Medicine, and Universal Fidelity Life Insurance Company. 

Music has always been important to the Gehr family. Liz and Eric met performing in college, and would sing their sons, Thomas and Michael, to sleep with harmony. The family sang the National Anthem four times for the Oklahoma City Redhawks, starting when Thomas and Michael were in second and fourth grades. So when Michael was diagnosed, the family reacted with music, creating the Cure FA Soirée ! Thomas and Michael, talented friends, and professionals including their school music faculty, fill the evenings with music, interspersed with stories of FA and efforts to treat and cure it. 

Thanks to funding by FARA, incredible progress has been made toward finding treatments. Sponsorships will save lives! The Cure FA Soirée invites businesses, foundations, families, and other entities to sponsor. Reserved tables with eight tickets are also available for $1,000, but without the promotions of sponsorships. The Soirée website, www.curefasoiree.org , has details on the 2020 event. To sponsor, please contact Eric at (405) 503-5875 or eric@gehr.org . See you at the Soirée!!! 

The Cure FA Soirée debuted in 2018, exceeding expectations, with 220 attendees, dozens of friends and professionals performing, and $64,000 raised for FARA. 2019 brought 230 guests, more wonderful performances, and $120,000 for FARA. Families of 12 people with FA attended the first two Soirées, and speakers included local FA researchers Sanjay Bidichandani and Layne Rodden, from OU Medicine. Soirée goals for 2020 are 250 guests and $150,000 for FARA! 

Michael Gehr , a 2018 Presidential Scholar (www2.ed.gov/programs/psp) and recipient of Heritage Hall’s Faculty Award, recently completed his third semester at Washington University in St. Louis, and he plans to study math and economics. In 2016 Michael participated in a clinical trial of omaveloxolone, by Reata Pharmaceuticals. The next year he screened The Ataxian , which was seen by 270 people and raised $32,000 for FARA. In early 2019 Michael began an extension of the omaveloxolone trial, so he’ll fit clinical visits into his studies for the next two years. Since omaveloxolone’s Phase II Clinical Trial reported positive results in late 2019, we may soon see the first drug approved to partially-alleviate symptoms of FA! 

The Friedreich’s Ataxia Research Alliance (FARA) fosters development of promising discoveries to slow, stop, and reverse the damage of Friedreich’s ataxia. Eighteen potential treatments are in FARA’s pipeline with several ongoing clinical trials. FARA is a national, public, 501(c)(3) non-profit, tax-exempt organization (Tax ID 52-2122720) dedicated to research aimed at treating and curing FA. For further info, visit www.cureFA.org , call (484) 879-6160 or e-mail info@cureFA.org . 

Great News!

The Gehrs with author Kyle Bryant at the 2019 rideATAXIA Philly event

As you know, our family travelled to Philadelphia for rideATAXIA in October and a scientific symposium on Friedreich’s ataxia hosted by the Children’s Hospital of Philadelphia today. At the end of the symposium, timed for the financial markets’ close, came the announcement by Reata Pharmaceuticals that the drug Omaveloxolone, the clinical trial drug Michael was and is on, was successful in its final trial, the first time an FA drug has made it this far! FARA and Reata have been working closely with the FDA to design this study so it is fairly certain this drug will be the first approved treatment for Friedreich’s ataxia, the first in 150+ years since the disease was discovered!!!

Michael is currently in extension of this trial, so he is receiving the real drug, not a placebo. We think it is likely he will continue in this extension until the drug is approved, at which time he should be able to get it by prescription.

I’m sure you can imagine the cheers, applause, & tears in the room when the press release was read by the man who founded FARA 30+ years ago. It will still be several years before additional treatments can halt, or even reverse progression, but Omaveloxolone will help keep folks as healthy as possible until such a time that better treatments are approved. Our family is on cloud 9 right now and we wanted to share this great news.

Here’s a link to Reata’s announcement if you’d like more info:

https://reatadev.wpengine.com/press-releases/reata-announces-positive-topline-results-from-the-moxie-registrational-trial-of-omaveloxolone-in-patients-with-friedreichs-ataxia/