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Nikki is immersed in the world of spinal muscular atrophy, and rare disease, and has become a fierce advocate for these communities. Nikki has spearheaded various charitable events reaching families, sponsors, and donors, to raise funds for medical research. She has spoken in front of live groups of hundreds of people to share her family’s story and promote the need for further medical research and funding.
Nikki, her son Miles, and the McIntosh family have been interviewed and featured in various newspapers and magazines, and their rare-disease journey has been highlighted in several documentary films.
Nikki has represented the rare-disease parent voice to various biotech companies. Through interviews, podcasts, speaking, and writing, she sheds light on the challenges parents face while raising children with a rare disease.
Nikki is the founder and creator of Rare Mamas®, a resource and community to support rare disease mothers, and the host of the Rare Mamas® Rising podcast, a platform for rare moms to share their stories and learn from one another.
Nikki is an engaging communicator, sharing her experience raising a child with a rare disease with honesty and authenticity. She gives voice to the many parents navigating chronic illnesses with their children. Her mission to help these parents shines through. Nikki's story about the strength of the human spirit was so relatable, we invited her to return to continue the conversation.
Montel Williams, Host, FREE THINKING with Montel podcast
I have had the opportunity to work with Nikki McIntosh not once, but twice and both times were an absolute pleasure. When we interviewed her live on the show, she was not only eloquent but extremely focused on communicating her message. Overall, Nikki would be a huge asset to any project. She is the full package with skills on how to brand, promote, and engage with audiences, all with passion and eloquence to deliver a powerful message. She is a bright light in what can be a dark world of rare diseases and empowers other women who face similar challenges to take hold of their power and fight.
Brittany Cocilova, Sr. Writer/Producer, Behind the Mystery on Lifetime TV
Nikki was the final keynote speaker at our parent science conference. Nikki took the stage and changed the energy in the room. She lightened the weight of what we heard that day through inspiration. She didn't diminish our challenges. With depth, love, and strength, she inspired us to accept our challenges and rise. Nikki is not just a typical speaker. She is one of the great speakers of our time--the type that ignites something inside you that you didn't know existed. She is the Martin Luther King Jr. of speakers for the rare disease community. I'm grateful our community has someone with her strength and character to lean on.
Nasha Fitter Cofounder/CEO, FOXG1 Research Foundation Global Head, Data Platform, Invitae, Patient advocate for Amara
Ms. McIntosh was invited as a panelist for the topic “The ABCs of Advocating for Your Child’s Education” at the 2021 Living Rare, Living Stronger NORD Patient and Family Forum. Parents of children living with rare diseases are often seeking applicable advice with actionable tips, and Nikki came prepared with both. The key takeaways were actionable for participants of this session, and the feedback from participants was positive with 100% of evaluation respondents strongly agreeing to the statement “The speakers were knowledgeable and shared information in a clear, understandable way” and 100% agreeing that the session met the learning objective.
Rebecca Aune, MPA, Director of Education Programs, National Organization for Rare Disorders
Nikki McIntosh is a powerful voice in the community of rare parents, caregivers and advocates. She speaks with polish and passion. She easily connects to those who have lived a similar experience as well as those who may need to better understand a world of complex medical needs they can hardly imagine. I plan to continue to invite her to share her knowledge and perspective at future Global Genes events.
Daniel DeFabio, Director of Community Engagement, Global Genes
Nikki’s warm, welcoming, impassioned and pragmatic approach to connecting with the rare community, all while sharing her own personal experiences is the hallmark of her effort to inspire resiliency among the parents of children diagnosed with rare diseases. True to form, her proactiveness in working to encourage parents to meet their trials head-on and her ability to find a light in the darkness was so well received by our group that we’ve asked her to speak to a wider audience at our upcoming Annual Family Conference.
Becky Benson, NTSAD Conference and Family Services Coordinator, and Rare Mama
Nikki's session at our annual conference was a tremendous success. She was easy to work with during the planning process and took the time to truly understand our rare disease and the challenges our families face. She tailored her session to fit the needs of our community, and our families loved having Nikki at the conference.
Chelsey McCarthy, Executive Director, DDX3X Foundation
The Rare Mamas Rising podcast is an incredible resource for RARE caregivers; heck, great for ALL caregivers! Nikki hosts from the heart and digs deep with her guests to bring substance and support to all her listeners.
Deb Ayres, President The Avalon Foundation, Life Coach, & Rare Mama to Avalon
Nikki is a wonderful human being. She presents herself as a passionate, inspiring, relatable and empathic advocate, who is very attuned to the needs of the rare disease community. It was an honor to be a guest on her “Rare Mama” podcast. Nikki is a true gem to the rare mama community.
Carol Gelbard, LCSW, Emotional Wellness Director Neuromuscular Disease Foundation
Rare Mamas is a glimpse into perhaps the “not so rare” world of parenting a child with medical complexity or special needs. Though we are not a group in volume or numbers, our stories are. Nikki’s own story really resonates with all the conversations I wish that I could have had with other caregivers early on in my journey with our daughter's diagnosis. Whether it would have changed the course of anything, I won’t know, but feeling less alone would have been a game-changer.
Colleen Gagnon RN, BSN, CNRN, Clinical Nurse Coordinator Epilepsy and Neurology at Boston Children's Hospital, Mama to Niamh, Rare Daughter with DCX Band Heterotopia
Rare Mamas provides practical advice and a heavy dose of hope to parents and caregivers new to the rare-disease journey, as well as those who are many years in. Nikki gives voice to the experience of so many of us, providing a sense of camaraderie and belonging in a space where aloneness can feel overwhelming. She embodies grace, humor, strength, persistence, and unlimited hope in her life and in the Rare Mamas community. Thanks to Nikki for creating this safe space to learn, grow, connect, share, feel, and heal.
Stacey Walthers Naffah Director, Children’s Wisconsin Foundation Board, Childhood Cancer Advocate, Mama to a Childhood Rare Cancer Survivor
If your child has been diagnosed with a rare disease, the first thing on your to-do list should be to read Rare Mamas. As a mom of an exceptionally rare child, it took me years to amass the knowledge that you will gain in a few hours of reading Rare Mamas. Even more important than the knowledge you will glean, is the sense of hope that so many warrior parents are looking for during our battle for the best possible life for our children! It is possible, and I’m so honored to have Nikki as a champion in my corner to cheer me on!
Rachel Niemeyer-Sutherland, Special Education Community Advisory Committee Chair CUSD, Special-Needs Advocate, Mama to Princess Sophia-RARB Warrior