Peer to Peer Support Program
Peer to Peer Program
Welcome to the Love for Lewiston Peer-to-Peer Program, a space designed to connect, support, and empower families navigating a Spinal Muscular Atrophy (SMA) diagnosis.
NEWLY DIAGNOSED WITH SMA
This session focuses on newborn screening, a critical step in early detection that has transformed the landscape of SMA care and treatment.
Receiving an SMA diagnosis can be overwhelming—filled with questions, uncertainty, and the grief of an unexpected journey. In this conversation, parents and advocates openly share their experiences, from the shock of that first phone call to navigating medical options, finding support, and learning how to move forward with hope. They discuss the challenges of processing life-changing news, the importance of early treatment, and the strength of the SMA community.
Through this session, we aim to provide knowledge, community, and connection, ensuring that newly diagnosed families know they are not alone. Whether you're here as a parent, caregiver, or advocate, or medical professional we hope these stories bring you clarity, comfort, and a sense of community as we walk this path together.
Let’s dive in.
A Rare Genetic Disease
NEWLY DIAGNOSED PART 1
The Love for Lewiston Peer-to-Peer Program offers support, connection, and resources for families facing an SMA diagnosis. In this session on newborn screening, parents share their experiences, emphasizing early detection, challenges, and hope for newly diagnosed families.
NEWLY DIAGNOSED PART 2
In part 2, parents and advocates reflect on the fears and grief that accompany an SMA diagnosis, from life expectancy concerns to the loss of expected childhood milestones. Through open and honest conversations, they also highlight the incredible support systems, medical advancements, and the resilience of their children. This program serves as a vital space to bring hope, resources, and visibility to SMA, ensuring that newly diagnosed families know they are not alone and that there is a path forward.
NEWLY DIAGNOSED PART 3
In part 3, participants discuss the crucial role of early support networks - both medical and peer-led as well as the journey of navigating an invisible diagnosis. From the initial shock and fear to finding community and learning to advocate for their children, families share the practical and emotional aspects of their experience. This program reinforces that no one should face an SMA diagnosis alone, and through shared stories and resources, families can find strength, hope, and a way forward.
NEWLY DIAGNOSED PART 4
In part 4, parents reflect on the role of family and friends in providing meaningful support - whether through emotional presence, practical assistance or helping gather critical resources. They share the weight of receiving life-altering news, the challenges of processing information alone, and the importance of community in the journey ahead. Through these conversations, the program empowers newly diagnosed families with wisdom, reassurance, and a reminder that they are never alone in this journey.
NEWLY DIAGNOSED PART 5
The Love for Lewiston Peer-to-Peer Program fosters connection, resilience, and hope for families navigating an SMA diagnosis. In this final part of Newborn Screening, families reflect on the kindness and support they've received, the progress in newborn screening, and the impact of advocacy. They share how Love for Lewiston has provided essential resources, restored spontaneity, and strengthened their community. This program is a reminder that no one is alone and that a full, meaningful life is possible.
PHYSIO THERAPY
This session focuses on physiotherapy and movement, exploring the impact, challenges, and creative approaches to staying active. Our panel shares personal experiences - from childhood therapy to the realities of maintaining strength as adults. They discuss barriers like cost, accessibility, and independence, as well as what they wish they had done differently.
In partnership with Novartis, this conversation aims to educate, empower, and equip families with the tools they need. Whether you're newly diagnosed or years into your journey, this session is here to inspire and support you.
Let’s dive in!
PHYSIO THERAPY PART 1
In part 1, teens and adults living with SMA share candid reflections on their physiotherapy journeys - from what helped in childhood to the barriers they face today. They open up about the physical and emotional impact of therapy, the importance of movement, and the challenges of access, cost, and finding knowledgeable practitioners. Through their lived experience, they highlight that physio isn't one-size-fits-all but staying active in ways that work for each person can make a powerful difference.
PHYSIO THERAPY PART 2
In part 2, participants dive deeper into the ongoing work of managing their health - physically, mentally, and emotionally. They explore how physiotherapy, while often essential, can come with barriers like cost, time, and the challenge of finding professionals who truly understand SMA.
PHYSIO THERAPY PART 3
Part 3 dives into the realities of staying consistent with physiotherapy while living with SMA. Participants discuss barriers like time, cost, and energy, and emphasize the importance of supportive caregivers and motivating environments. By removing access challenges and building personalized routines, physio can become a more sustainable and empowering part of life.
PHYSIO THERAPY PART 4
Movement looks different for everyone living with SMA, and finding fun, personalized ways to stay active is key. Participants shared how Love for Lewiston has supported their independence and well-being through funding and community. The session highlights the power of consistency, creativity, and a strong support system in staying physically and emotionally resilient.
This program is brought to you in collaboration with Novartis.
They were not part of any filming.
We are thankful for their support of Love For Lewiston and the SMA community.
TRANSITIONING TO ADULTHOOD LIVING WITH SMA
In this session, we explore what it really looks like to transition into adulthood while living with Spinal Muscular Atrophy (SMA). From moving out and managing care to navigating healthcare and funding systems, our Peer-to-Peer community shares honest stories, practical tips, and hard-earned wisdom. Whether you're planning for the future or already in it, this conversation reminds you that you're not alone - and that thriving with SMA is possible.
TRANSITIONING TO ADULTHOOD LIVING WITH SMA PART 1
In Part 1 of this session, the conversation focuses on the challenges and realities of transitioning into adulthood while living with SMA. Each participant shares their current living situation and explores what independence looks like when round-the-clock care is necessary. Through stories of both struggle and adaptation, this session sets the stage for a deeper look at what it really takes to live independently with SMA.
TRANSITIONING TO ADULTHOOD LIVING WITH SMA PART 2
In this part of the session, participants reflect on the challenges of hiring friends as caregivers and the emotional toll of navigating care while maintaining relationships. Many choose to stay living at home - not out of preference, but because of the lack of adequate caregiver funding and support. They also discuss nighttime care, evolving physical needs, and the early challenges of transitioning from pediatric to adult healthcare systems.
TRANSITIONING TO ADULTHOOD LIVING WITH SMA PART 3
This session explores the difficult shift from pediatric to adult healthcare systems - loosing access to centralized, team-based care and must begin advocating for themselves. From managing multiple appointments to facing different challenges - they emphasize the importance of being proactive and prepared. Despite the hurdles, many are learning to navigate independence and manage their health with increasing resilience.
TRANSITIONING TO ADULTHOOD LIVING WITH SMA PART 4
Part 4 dives into the challenges of aging into adult support systems like AISH, with participants debating the impact of outdated and stigmatizing language in program names. While some accept the term for its practicality, many highlight its harmful effects on young people navigating disability identity. The group also emphasizes the importance of having a dedicated support person during transition and how navigating funding, care, and independence continues to be a major balancing act.
TRANSITIONING TO ADULTHOOD LIVING WITH SMA PART 5
This session exposes the gaps between what government support offers and what true independence requires for people with SMA. Participants reflect on managing their care with limited funding, advocating for better program design, and the emotional toll of constant scheduling. From catheter surgery stories to savings penalties and inaccessible housing, the conversation offers a powerful glimpse into the complexity of transitioning into adulthood with a disability.
TRANSITIONING TO ADULTHOOD LIVING WITH SMA PART 6
This final session dives into actionable advice for young adults with SMA looking to transition into independent living. From hiring the right caregivers to redefining what independence looks like, the group shares powerful insights from lived experience. The conversation ends with gratitude toward Love for Lewiston, whose support has helped bridge critical gaps in care and community.
There are three easy ways for you to donate:
Donate Directly
Make a donation through our online portal at loveforlewiston.com (include the name of the birthday girl/boy in the comments)
Donate Online
Donate directly via etransfer to hello@loveforlewiston.ca
Donate With Cash
Bring a cash donations to the party and make one contribution
