I Care for Rare

International Rare Disease Day with Wes Michael

In this special episode of I Care for Rare, host Sherrilynne Starkie and Sandra Markus, founder of I Care for Rare, [https://icareforrare.com/] welcome Wes Michael [https://www.linkedin.com/in/wes-michael-7a17334/] to the show in honour of International Rare Disease Day. Wes is the founder of Rare Patient Voice [https://rarepatientvoice.com/], an organization dedicated to ensuring that rare disease patients and their families have the opportunity to share their stories and insights. In this conversation, Wes shares how empowering patients to have their voices heard can lead to better healthcare outcomes, stronger advocacy, and more inclusive research. “Every patient has a story, and every story has the potential to change how we think about healthcare and support for rare disease communities,” says Wes. Sandra [https://www.linkedin.com/in/sandramarkus/] also reflects on her personal journey as a mother to Zach, whose rare disease remained undiagnosed for 18 years, highlighting the importance of raising awareness and fostering community connections. This episode highlights the essential work of CORD [https://www.raredisorders.ca/] (Canadian Organization for Rare Disorders) and their "Canada's Rare Disease Strategy," a comprehensive plan with five key action points: * Improving early detection * Ensuring timely care * Enhancing community support * Providing access to promising therapies * Promoting innovative research How You Can Help: Visit our website [https://icareforrare.com/be-heard/] to learn how you can advocate for better healthcare support, community resources, and rare disease research. WE NEED YOUR HELP Please help us make healthcare better for people with rare disorders in Ontario! We want to support individuals, families, and caregivers who are dealing with these uncommon health issues.  Healthcare in Ontario is falling behind. That’s why we're supporting Bill 129 to change the Health Protection and Promotion Act. This law will help put into action the good ideas from the Rare Disease Working Group Report, which was made on March 10, 2017. Here’s how you can help:  * Sign MPP Bhutila Karpoche’s petition for an Ontario Rare Disease Strategy. [https://icareforrare.com/wp-content/uploads/2023/11/Rare-Disease-Strategy-Act-2023-2.pdf] * Download our letters and send them to your government officials. [https://icareforrare.com/be-heard/] Follow us on social media and share our content with your friends and connections: * X (Formerly known as Twitter [https://twitter.com/care_i78410] * Facebook [https://www.facebook.com/profile.php?id=100067873785747] * Instagram [https://www.instagram.com/icareforrare/]

The Unsung Heroes: Siblings Caring for Loved Ones with Rare Diseases

I Care for Rare is a podcast for parents and families of people living with rare diseases. It’s co-hosted by Sherrilynne Starkie [https://www.linkedin.com/in/sherrilynne/] and Sandra Markus [https://www.linkedin.com/in/sandramarkus/], the visionary behind the I Care for Rare campaign  [https://icareforrare.com/]and its mission to create a collective voice for individuals, families, and caregivers living with rare diseases, inspired by her experience caring for her adult son, Zach. Joining them on the show is Helen Ries, the co-founder of Siblings Canada [https://canadiancaregiving.org/siblingscanada/],  part of the Canadian Centre for Caregiving Excellence [https://canadiancaregiving.org/], who shares her personal and professional insights on the critical role siblings play in caring for people with disabilities or rare diseases. Helen became the carer of her brother Paul when they lost their parents suddenly and in close succession.It’s been a 10-year journey in getting the support they need so that Paul can live his best life and, in turn, Helen and her husband can too.  Helen discusses the emotional and logistical challenges she faced in becoming Paul’s carer. She explains how caregiving has affected her relationship with her husband and her professional career and recounts her frustrating experiences with the developmental services system, where she encountered insensitive and outdated views about caregiving roles.  This experience fueled her determination to advocate for sibling caregivers and resulted in the foundation of Siblings Canada, an initiative aimed at supporting and connecting siblings who care for family members with disabilities.  The I Care for Rare social advocacy campaign seeks to drive reform in healthcare and community support systems for rare diseases. With over 3,000,000 Canadians affected by rare diseases, the absence of a comprehensive support strategy in Canada leaves many struggling to cope with daily life. The campaign, aims to unite and empower those affected by rare diseases, representing their collective voice. This podcast highlights the essential work of CORD [https://www.raredisorders.ca/] (Canadian Organization for Rare Disorders) and their "Canada's Rare Disease Strategy," a comprehensive plan with five key action points. These points include: * improving early detection, * ensuring timely care, * enhancing community support, * providing access to promising therapies, and * promoting innovative research. "I Care for Rare" calls on both the Canadian Federal and Ontario Governments to amend the Health Protection and Promotion Act, aligning with the recommendations outlined in CORD's Rare Disease strategy. Helen Ries Helen Ries is the co-founder of Siblings Canada, an initiative of the Canadian Centre for Caregiving Excellence. Siblings Canada raises awareness of the critical role siblings play in creating robust and responsive systems of care for people with disabilities. Helen is a community builder, innovator, and most importantly, a carer to her brother Paul. With a lifetime of advocacy, she has learned the power of full and inclusive citizenship for all community members. Helen holds an MBA from the University of Guelph.     WE NEED YOUR HELP Please help us make healthcare better for people with rare disorders in Ontario! We want to support individuals, families, and caregivers who are dealing with these uncommon health issues.  Healthcare in Ontario is falling behind. That’s why we're supporting Bill 129 to change the Health Protection and Promotion Act. This law will help put into action the good ideas from the Rare Disease Working Group Report, which was made on March 10, 2017. Here’s how you can help:  * Sign MPP Bhutila Karpoche’s petition for an Ontario Rare Disease Strategy. [https://icareforrare.com/wp-content/uploads/2023/11/Rare-Disease-Strategy-Act-2023-2.pdf] * Download our letters and send them to your government officials. [https://icareforrare.com/be-heard/] Follow us on social media and share our content with your friends and connections: * X (Formerly known as Twitter [https://twitter.com/care_i78410] * Facebook [https://www.facebook.com/profile.php?id=100067873785747] * Instagram [https://www.instagram.com/icareforrare/]

Powering Through Adversity: Personal Trainer Shaun Kehoe’s Journey from Brain Surgery to Fitness Advocate

The I Care for Rare [https://icareforrare.com/] podcast reveals the challenges faced by the families caring for people who have a rare health condition, In this episode we delve into the challenging world of rare diseases with Sandra Markus, [https://www.linkedin.com/in/sandramarkus/] founder of iCare4Rare, and Shaun Kehoe [https://shaunkehoe.com/], a certified personal trainer with a remarkable journey of his own.  Zach, Sandra’s adult son with special needs, regularly works out with Shaun Kehoe [https://shaunkehoe.com/about/]. Unfortunately, many of those who need his services the most can’t get access to the necessary funding. In this show Shaun opens up about his own rare condition, cavernous angioma, and the series of brain surgeries he’s endured to treat his epilepsy. Despite these considerable obstacles, Shaun found solace and strength in fitness, turning his health struggles into a career dedicated to helping others overcome their challenges. He shares his experience of the importance of holistic approaches [https://shaunkehoe.com/train/] to health and the power of resilience in facing life's adversities. I Care for Rare is more than just a podcast; it's a social advocacy campaign that seeks to drive reform in healthcare and community support systems for rare diseases. With over 3,000,000 Canadians affected by rare diseases, the absence of a comprehensive support strategy in Canada leaves many families grappling with uncertainty and fear. The campaign, aims to unite and empower those affected by rare diseases, representing their collective voice. This podcast highlights the essential work of CORD [https://www.raredisorders.ca/] (Canadian Organization for Rare Disorders) and their "Canada's Rare Disease Strategy," a comprehensive plan with five key action points. These points include: * improving early detection, * ensuring timely care, * enhancing community support, * providing access to promising therapies, and * promoting innovative research. "I Care for Rare" calls on both the Canadian Federal and Ontario Governments to amend the Health Protection and Promotion Act, aligning with the recommendations outlined in CORD's Rare Disease strategy. WE NEED YOUR HELP Please help us make healthcare better for people with rare disorders in Ontario! We want to support individuals, families, and caregivers who are dealing with these uncommon health issues.  Healthcare in Ontario is falling behind. That’s why we're supporting Bill 129 to change the Health Protection and Promotion Act. This law will help put into action the good ideas from the Rare Disease Working Group Report, which was made on March 10, 2017. Here’s how you can help:  * Sign MPP Bhutila Karpoche’s petition for an Ontario Rare Disease Strategy. [https://icareforrare.com/wp-content/uploads/2023/11/Rare-Disease-Strategy-Act-2023-2.pdf] * Download our letters and send them to your government officials. [https://icareforrare.com/be-heard/] Follow us on social media and share our content with your friends and connections: * X (Formerly known as Twitter [https://twitter.com/care_i78410] * Facebook [https://www.facebook.com/profile.php?id=100067873785747] * Instagram [https://www.instagram.com/icareforrare/]

The Social Isolation of Caring For Someone with a Rare Disorder

I Care for Rare reveals the challenges faced by the families caring for people who have a rare health condition. In this episode of the I Care for Rare [https://i-care-for-rare.simplecast.com/] podcast host Sherrilynne Starkie [https://www.linkedin.com/in/sherrilynne/] and Sandra Markus [https://www.linkedin.com/in/sandramarkus/], founder of I Care for Rare, welcome Carl Weatherall [https://www.linkedin.com/in/carlweatherell/] to the show. As father to Alyssa, a young woman who experiences hundreds of epileptic seizures each day, Carl’s spent more than 20 years advocating for  the healthcare, education and social support his daughter  I Care for Rare is more than just a podcast; it's a social advocacy campaign [https://icareforrare.com/] that seeks to drive reform in healthcare and community support systems for rare diseases. The campaign, aims to unite and empower those affected by rare diseases, representing their collective voice. In this show, Carl discusses the challenges of parenting a child with  complex needs into adulthood and the resulting social isolation his family has endured.  “You get socially isolated because you spend so much time and are ever focused on your child that you just haven't got time for other people,” explains Carl. “You don't want to socialize because you're exhausted and you haven't slept in days.” Sandra also shares her own experiences as mother to Zach, who was also born with a rare disease that remained undiagnosed for 18 years. This podcast highlights the essential work of CORD [https://www.raredisorders.ca/] (Canadian Organization for Rare Disorders) and their "Canada's Rare Disease Strategy," a comprehensive plan with five key action points. These points include: * improving early detection, * ensuring timely care, * enhancing community support, * providing access to promising therapies, * and promoting innovative research. "I Care for Rare" calls on both the Federal and Ontario Governments to amend the Health Protection and Promotion Act, aligning with the recommendations outlined in CORD's Rare Disease strategy. WE NEED YOUR HELP Please help us make healthcare better for people with rare disorders in Ontario! We want to support individuals, families, and caregivers who are dealing with these uncommon health issues.  Healthcare in Ontario is falling behind. That’s why we're supporting Bill 129 to change the Health Protection and Promotion Act. This law will help put into action the good ideas from the Rare Disease Working Group Report, which was made on March 10, 2017. Here’s how you can help:  * Sign MPP Bhutila Karpoche’s petition for an Ontario Rare Disease Strategy. [https://icareforrare.com/wp-content/uploads/2023/11/Rare-Disease-Strategy-Act-2023-2.pdf] * Download our letters and send them to your government officials. [https://icareforrare.com/be-heard/] Follow us on social media and share our content with your friends and connections: * X (Formerly known as Twitter [https://twitter.com/care_i78410] * Facebook [https://www.facebook.com/profile.php?id=100067873785747] * Instagram [https://www.instagram.com/icareforrare/]

Jen Schultz: Caring for her one-of-a-kind daughter

In this episode of the I Care for Rare podcast hosts Sandra Markus [https://www.linkedin.com/in/sandramarkus/] and Sherrilynne Starkie [https://www.linkedin.com/in/sherrilynne/] interview Jen Schultz, a parent who is in the front lines of caring for a one-of-a-kind young woman. Her daughter Olivia is the only person in the world to be diagnosed with her rare disease. She has very complex needs and she and Jenn, as her carer, face many challenges.  This podcast, I Care for Rare, is part of a social advocacy campaign [https://icareforrare.com/] that seeks to drive reform in healthcare and community support systems for rare diseases. The campaign strives to unite and empower those affected by rare diseases and to represent their collective voice. Jen shares her touching story about the joys and challenges of life as Olivia’s primary carer. “Olivia has a partial mosaic trisomy of chromosome 17 in the ring format. And the ring of her diagnosis makes her one in the world. It makes her unique and at the time of diagnosistreatment was given to us in a broad spectrum,” explains Jen. “It was she may never walk, she may never talk, so we're just going to throw occupational therapy, physiotherapy, and speech therapy at you and see what happens. But you really don't know where you're going with it all. We want Olivia functioning in society. We want her to be happy. We want her to be accepted by people.” Jen and Olivia’s story highlights the need for a comprehensive national strategy to support people with rare diseases, their families and carers and explores potential solutions for better social supports. This podcast highlights the essential work of CORD [https://www.raredisorders.ca/] (Canadian Organization for Rare Disorders) and their "Canada's Rare Disease Strategy," a comprehensive plan with five key action points. These points include: * improving early detection, * ensuring timely care, * enhancing community support, * providing access to promising therapies, * and promoting innovative research. "I Care for Rare" calls on both the Federal and Ontario Governments to amend the Health Protection and Promotion Act, aligning with the recommendations outlined in CORD's Rare Disease strategy.   WE NEED YOUR HELP Please help us make healthcare better for people with rare disorders in Ontario! We want to support individuals, families, and caregivers who are dealing with these uncommon health issues.  Healthcare in Ontario is falling behind. That’s why we're supporting Bill 129 to change the Health Protection and Promotion Act. This law will help put into action the good ideas from the Rare Disease Working Group Report, which was made on March 10, 2017. Here’s how you can help:  * Sign MPP Bhutila Karpoche’s petition for an Ontario Rare Disease Strategy. [https://icareforrare.com/wp-content/uploads/2023/11/Rare-Disease-Strategy-Act-2023-2.pdf] * Download our letters and send them to your government officials. [https://icareforrare.com/be-heard/] Follow us on social media and share our content with your friends and connections: * X (Formerly known as Twitter [https://twitter.com/care_i78410] * Facebook [https://www.facebook.com/profile.php?id=100067873785747] * Instagram [https://www.instagram.com/icareforrare/]