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Friedreich's ataxia (FA) is a rare, inherited disease that damages the nervous system and can lead to balance and coordination problems (ataxia). Symptoms often start in childhood and get worse over time, potentially causing difficulties with walking, speech, and swallowing. 

FA, caused by a genetic defect passed down from both parents, can also lead to other health issues like heart problems, diabetes, and scoliosis. It's 

FA results in a cardiomyopathy (disease of the heart muscle) characterized by thickening, stiffening, and ultimately failure of the heart. The most common cause of death for individuals with Friedreich's ataxia heart failure or sudden cardiac death.

Individuals with Friedreich's ataxia living in Southern Alberta have a wonderful resource. The Broderick Cardiac Neuromuscular Clinic, located at Peter Lougheed Centre, provides medical are for patients and their families living with FA and other inherited disorders that affect the heart muscle.

Led by Dr. Omid Kiamanesh, MD, the clinic is made up of a multidisciplinary team of dedicated nurse clinicians, physicians, administrative support staff. They collaborate with a working group of neurologists, physiatrists, respirologists, and allied health care professionals devoted to caring for persons with neuromuscular disorders. 

鈥淥ur clinic is the only one of its kind in Southern Alberta,鈥� says Kiamanesh. 鈥淥ur patients often have complex needs, so it鈥檚 important that we provide a team to give them nuanced and personalized care. Multidisciplinary care for neuromuscular disorders is associated with improved clinical outcomes and quality of life.鈥� 

One of those patients is Kadence Foley, a remarkable young woman who lives with FA.

Foley was diagnosed with FA in 2015, along with her sister Addison, who sadly passed away in 2020 due to heart complications associated with her condition. 

Now 21, Foley鈥檚 journey has brought her to the Broderick Cardiac Neuromuscular Clinic under Kiamanesh鈥檚 care. 

Shanna Leavitt, Foley鈥檚 mom, says the clinic provides a warm, supportive community that has eased her and her daughter鈥檚 fears.   

鈥淲e did lose Addison to the problems with her heart, and we don鈥檛 know how Kadence鈥檚 heart will react, so it鈥檚 important to have that support,鈥� says Leavitt. 鈥淲e find the team very responsive, which helps so much.鈥� 

Leavitt has noticed a great deal of collaboration goes on behind the scenes between the clinic and her daughter鈥檚 other specialists, who are located in different clinics around the city.  

鈥淲e know they are consulting about Kadence, and I appreciate that so much,鈥� she says. 

Foley鈥檚 health needs are complex. Not only does she have FA, which causes palpitations and some chest pain, but she also requires a wheelchair and suffers from diabetes and epilepsy. 

Fortunately, the young woman enjoys visiting the clinic. 

鈥淚t was challenging at first to graduate to adult care, but I met Dr. O (Kiamanesh) shortly after, and I am very comfortable with him,鈥� says Foley. 鈥淭he clinic has created a friendly community and it鈥檚 nice to go there.鈥� 

Despite her mobility and other issues, she remains active 鈥� heading to the gym twice a week, working at the Airdrie Boys and Girls Club and studying social media and digital marketing through online classes at Mount Royal University.

Foley is also a good friend and seeks out ways to help others. 

For example, she has become an unofficial ambassador at the clinic, reaching out and offering support to other young women with FA. 

Leavitt is proud that her daughter puts herself out there for others.  

鈥淔A can be lonely, but Kadence and I talk a lot about our great community,鈥� she says. 鈥淜adence has said she wants to be able to be there for others, and it鈥檚 good for her.鈥� 

Kiamanesh says Kadence and Shanna鈥檚 resilience and clarity about what is important in life inspire him. 

鈥淭hey are authentic, open, and thoughtful people, and I feel so fortunate to be able to participate in their lives,鈥� he says. 鈥淎s a physician, I am humbled and honoured that they allow me to share in their joys and victories and grieve with them over their loss.鈥�

Dr. Omid Kiamanesh is a Clinical Assistant Professor in the Department of Cardiac Sciences at the Cumming School of Medicine and a member of the Libin Cardiovascular Institute. He heads the Broderick Cardiac Neuromuscular Clinic and the Broderick Genetic Cardiomyopathy Clinic.