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Shedding Light on Rare Diseases: Amplifying Voices of Diversity and Resilience

By February 29, 2024Blog

Today, February 29th, is Rare Disease Day.  This day reminds us that it is imperative to delve deeper into the complexities of living with rare diseases, particularly within diverse and marginalized communities. While these conditions may individually affect a small number of people, collectively they impact millions worldwide, highlighting the urgent need for greater awareness, understanding, and support. In this extended blog post, we’ll explore the multifaceted intersection of rare diseases with issues of diversity, representation, and resilience, with a particular focus on underserved populations, including people of color (POC) and LGBTQ+ communities while introducing the film HOLDING MOSES, which will be screened by Give an Hour February 29th, 2024 at 7pm EST where we will host a virtual screening of the 17-minute film, followed by a conversation with the project’s featured subject Randi Rader and the film’s Directors, Rivkah Beth Medow and Jen Rainin. 

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Rare diseases, also known as orphan diseases, are defined by their low prevalence, typically affecting fewer than 200,000 individuals in the United States. Despite their rarity, there are over 7,000 known rare diseases, encompassing a diverse range of conditions that can affect any organ system and manifest at any stage of life. From genetic disorders to autoimmune conditions, rare diseases present unique challenges for diagnosis, treatment, and management. 

Within the realm of rare diseases, there exists a complex interplay of factors that disproportionately impact marginalized communities. People of color, for example, often face disparities in access to healthcare, diagnostic delays, and limited treatment options, exacerbating the burden of living with a rare condition. Additionally, cultural stigmas, language barriers, and socioeconomic inequalities can further hinder their ability to receive timely and adequate care. 

Similarly, LGBTQIA+ individuals navigating rare diseases may encounter additional obstacles related to discrimination, lack of culturally competent healthcare providers, and challenges in disclosing their identities within medical settings. These intersecting identities underscore the importance of adopting an inclusive and intersectional approach to rare disease advocacy and support. 

Amidst the myriad of challenges posed by rare diseases, stories of resilience and perseverance serve as beacons of hope and inspiration. One such story is that of Randi, a Broadway performer and parent to Moses, a child with a rare and profound disability. Randi’s journey, as depicted in the documentary “Holding Moses,” illuminates the intersection of queerness, disability, and family dynamics with raw vulnerability and authenticity. 

We had a moment to sit down and interview Randi, to delve deeper into her experiences as a caregiver and advocate, exploring the ways in which her journey intersects with issues of diversity and representation within the rare disease community. By amplifying voices like Randi’s, we not only raise awareness of rare diseases but also challenge societal norms and misconceptions surrounding disability, queerness, and caregiving. “Really, having Moses has shifted my perspective on everything in general – so it really has become more of a purpose for me, and I bring it into all aspects of my life.” Randi, a 48-year-old attorney for Meta – does a lot of diversity work at the organization – one leadership role among the steering committee for diversity. 

Randi continues to share the story behind “Holding Moses.” “This did not actually start with my desire at all.” Randi expresses her focus is living her life with her kids and Moses – “I was experiencing and working through heartache and pain around having a disabled child of almost 8 years. My partner Rivka, who is one of the Directors of the film, was dealing with a really deep grief of her own in her own life. And she didn’t quite know how to approach that,” she continues.  

“And she had never been faced with something so challenging. And so right as the pandemic came about and we were starting to shut down, she asked if she could interview me. I had never told my story from start to finish to anyone before. Sometimes in therapy, but I had never really sat down and told someone my story.”  

This was something new and different for Randi – however it was a process that involved connection, community, which really started the beginning of this journey. 

“It was just me talking to an intimate partner and she took that radio edit and, it was three hours long and she cut it down to about, I don’t know, 30 minutes or so I think. And shared it with her creative partner and they thought, is there something here? And they thought, yeah, there really is. We want to talk about Caregivers. We want to talk about ableism. We want to discuss disability, intersectionality, queerness, and parenting. And so, we get to do this film. That’s a long answer.” 

As you watch the film, Randi is the driving force behind “Holding Moses,” shedding light on the profound significance of connection and community in navigating the complexities of raising a child with special needs. Reflecting on the essence of the film, Randi articulates, “What gets you to that support meeting, obviously the sense of connection.” She emphasizes the transformative power of shared experiences and mutual support, revealing how virtual meetings and daily text threads have become lifelines for families in similar circumstances.  

“Creating community is key,” Randi reiterates. “It’s about fostering genuine connections, sharing experiences, and offering mutual support. Through accountability and camaraderie, we combat the isolation often experienced by families like ours.” 

As the conversation deepens, Randi offers poignant insights into the evolving nature of hope in her journey with Moses. “My hope has shifted,” she shares candidly. “It’s no longer about meeting milestones but about cherishing moments of joy and ensuring Moses feels loved, happy, and connected.” Randi’s reflections illuminate the complexities of parenting a child with special needs and the profound impact of recalibrating expectations. 

“Hope takes on new dimensions,” Randi muses. “It’s about embracing moments of joy amidst uncertainty, fostering resilience, and finding beauty in unexpected places. I just want to make sure Moses knows he is loved – feels included.” 

 Randi underscores the transformative potential of “Holding Moses” in fostering greater understanding and compassion. Through screenings and discussions with medical professionals, educators, and community members, the film serves as a catalyst for empathy and awareness. “Personal stories have the power to bridge divides,” Randi asserts. “By sharing our experiences, we cultivate empathy, challenge stereotypes, and foster inclusivity. Education and exposure are key,” Randi emphasizes. “By humanizing our struggles and celebrating our triumphs, we pave the way for a more compassionate and inclusive society.” 

The conversation culminates in a heartwarming glimpse into Moses’s world, where love, joy, and connection reign supreme. Randi shares touching anecdotes of Moses’s endearing relationships, illustrating the profound impact of unconditional love and acceptance. “Moses embodies the power of love,” Randi reflects with a smile. “Through his simple yet profound expressions of affection, he reminds us of the beauty found in human connection. Love knows no bounds,” Randi concludes. “In embracing Moses’s journey, we discover the transformative power of love, resilience, and the human spirit. What Moses does require though, is just for me to show up as me.” 

Before we ended our conversation with Randi – I could not help but just ask – “Who and How is Moses?” To this point – I was so connected to this family – I needed to know.  

“Ryan, Moses is the most handsome guy. His nickname is Boyfriend. He really is a lover.”  

We learned from Randi that Moses’ best Friend is Kat – a one-on-one aid, that turned into family who then turned into Moses’ Godmother. She has a tattoo of an ‘M’ for Moses – and when Kat can visit – the two of them are very close. “They’re in love with each other in such a gorgeous way,” Randi lights up. “This is Moses, and this is the kind of relationship he fosters. He brings love and always wants to hug. People, often start crying, because they get the hug they have needed for a lifetime.”  

Randi concludes, “There’s no ego. There’s nothing. He gives you his full self. And then he’s joyful. He laughs and he’s beautiful and he’s a rare human in his disposition who is also very sweet and goofy.” We learned that Moses has become the mayor of their neighborhood. Randi laughs telling us, “So many people say ‘hello Moses’- people I don’t even know. People yelling out of their windows, emailing us, sending cookies, and cakes. He just connects with people more than I do.”  

In “Holding Moses,” Randi’s journey emerges as a poignant testament to the resilience of the human spirit and the transformative power of love. Through her candid reflections and heartfelt anecdotes, she invites us to embrace life’s complexities with grace and compassion. As we reflect on Randi’s words and Moses’s radiant spirit, may we be inspired to cultivate deeper connections, foster understanding, and cherish the moments of joy that unite us all. 

The above conversation allows us to pause and remind ourselves that despite advancements in medical research and technology, individuals from diverse backgrounds continue to face systemic barriers in accessing quality healthcare for rare diseases. Language barriers, cultural insensitivity, and implicit biases among healthcare providers can contribute to misdiagnosis, delayed treatment, and inadequate support for patients from marginalized communities. Addressing these disparities requires a multi-faceted approach that prioritizes cultural competence, community engagement, and equitable access to resources and support services. 

Furthermore, community-based organizations and advocacy groups play a crucial role in bridging gaps in healthcare access and providing tailored support for individuals and families affected by rare diseases. By centering the voices and experiences of diverse communities, these organizations can empower patients to navigate their healthcare journey with confidence and dignity. 

Living with a rare disease can take a toll on one’s mental health and well-being, as individuals navigate a myriad of physical symptoms, emotional challenges, and uncertainties about the future. The psychological impact of rare diseases is often compounded by feelings of isolation, stigma, and a lack of understanding from others. Moreover, caregivers and family members may experience heightened levels of stress, anxiety, and burnout as they support their loved ones through their healthcare journey. 

At Give an Hour, we recognize the unique mental health needs of individuals and families affected by rare diseases and the human-made trauma that can accompany this experience. Our organization is committed to providing accessible and culturally competent mental health support to those in need as Rare Caregivers, regardless of their background or diagnosis. Through our network of volunteer mental health professionals, we offer confidential counseling services, support groups led by Trauma Informed Peer Supporters, and educational resources informed by lived experience – to help individuals cope with the emotional challenges of caring for those living with a rare disease.  

As we commemorate Rare Disease Day this February 29th, let us reaffirm our commitment to amplifying the voices of those affected by rare conditions, particularly within diverse and marginalized communities. By fostering greater awareness, empathy, and support, we can create a more inclusive and equitable healthcare landscape where every individual, regardless of their background or diagnosis, is empowered to thrive – just like Moses does. 

Join us for a screening of the film HOLDING MOSES, February 29th, 2024, at 7pm EST where we will host a virtual screening of the 17-minute film, followed by a conversation with the project’s featured subject Randi Rader and the film’s Directors, Rivkah Beth Medow, and Jen Rainin. 

JOIN the Screening