Episodit
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RARE MAMAS RISING- EPISODE 41
Loving with Every Breath with Breath Taking Author Jessica Fein
Jessica Fein is the author of Breath Taking: A Memoir of Family, Dreams, and Broken Genes and host of the "I Don't Know How You Do It” podcast, which features people whose lives seem unimaginable and who triumph over seemingly impossible challenges. Her writing has appeared in Newsweek, Psychology Today, The Boston Globe, HuffPost, Scary Mommy, Zibby Mag, Kveller, and more. Jessica is a relentless warrior in memory of her dynamic daughter, whom she lost to the rare disease MERRF Syndrome in 2022. Her work encompasses hope and humor, grit and grace–the tools that make up her personal survival kit. Jessica serves on the Board of Directors of MitoAction. She’s the mother of three, whom she and her husband adopted from Guatemala. In this episode, Jessica shares her powerful journey with raw honesty, wisdom, and heart. Join us as we explore the intertwined emotions of joy and sorrow, love and loss, and uncover why Jessica’s new book is truly a love story and a moving testament to the enduring power of love.
EPISODE HIGHLIGHTS
Background about Jessica and her family How, as a problem-solver by nature, Jessica dealt with an unsolvable situation The difference between living in fear and living with fear Nurturing the conflicting emotions of sorrow and joy Staying present while experiencing painful circumstances The journey to writing Breath Taking Why Breath Taking is described as a love story Jessica’s hopes for her book Jessica’s learnings and advice for other rare mamasLINKS & RESOURCES MENTIONED
Jessica Fein
jessicafeinstories.com
https://www.instagram.com/feinjessica/https://www.facebook.com/jessica.fein.92/
https://www.linkedin.com/in/jessica-fein-b643b09/
https://podcasts.apple.com/us/podcast/i-dont-know-how-you-do-it/id1668168226
Breath Taking
jessicafeinstories.com
https://www.goodreads.com/author/show/826590.Jessica_Fein
Mito Action
https://www.mitoaction.org
CONNECT WITH NIKKI
Website
https://raremamas.com/
Instagram
https://www.instagram.com/Rare_Mamas/
Email
PODCAST INQUIRIES
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RARE MAMAS RISING- EPISODE 40
Preparing for a Planned Hospital Stay with Rare Mama Nikki McIntosh
In this episode of Rare Mamas Rising, host Nikki dives into the vital preparations for managing your child’s upcoming surgery or medical procedure. Nikki, sharing from her own experience with her son Miles, offers a comprehensive guide to help you navigate the emotional and logistical challenges of hospital stays. From educating yourself and organizing support to practical tips for during and after the hospital visit, this episode is packed with actionable advice to ease your anxiety and ensure both you and your child are as prepared as possible. Tune in for heartfelt support and practical strategies to make this challenging time a bit smoother.
CONNECT WITH NIKKI
Facebook
https://www.facebook.com/RareMamas1/
Instagram
https://www.instagram.com/Rare_Mamas/
Website
https://raremamas.com/
Email
PODCAST INQUIRIES
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RARE MAMAS RISING- EPISODE 39
Blazing Trails to Cure and Care with The Charlotte and Gwenyth Gray Foundation to Cure Batten Disease Founder Kristen Gray
Kristen Gray is an extraordinary mom of four incredible children: Charlotte, Gwenyth, Callan, and Gavin. From the moment her eldest two, Charlotte and Gwenyth, were diagnosed with Batten Disease, she embarked on a courageous journey blazing trails in rare disease advocacy. She founded The Charlotte & Gwenyth Gray Foundation to Cure Batten Disease and established The Gray Academy, a beacon of hope and education for children facing complex neurological disorders. Her unwavering dedication and pioneering spirit have been a driving force behind groundbreaking initiatives to find treatments and support families in similar situations. Join us as we delve into her inspiring story of resilience, hope, and relentless determination to change the future for her children and others.
EPISODE HIGHLIGHTS
The discovery of Charlotte and Gwenyth’s Batten Disease diagnoses Founding The Charlotte & Gwenyth Gray Foundation to Cure Batten Disease Development of The Gray Academy and their approach to education Balancing advocacy and motherhood Kristen’s vision for the future of children and families affected by neurological disorders Kristen’s best learnings for other rare mamasLINKS
The Charlotte & Gwenyth Gray Foundation to Cure Batten Disease
Website: www.curebatten.org
Instagram: @curebatten
Facebook: @curebattenThe Gray Academy
Website: www.thegrayacademy.org
Instagram: @thegrayacademy
Facebook: @thegrayacademy
CONNECT WITH NIKKI
Website
https://raremamas.com/
Instagram
https://www.instagram.com/Rare_Mamas/
Email
PODCAST INQUIRIES
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RARE MAMAS RISING- EPISODE 38
Mother’s Day Episode: On Bonding & Being There
with Rare Mama Nikki McIntosh
Join host Nikki on a heartfelt journey of motherhood in a special Mother's Day episode. From grand visions of bonding through shared interests to the reality of simply being present through life's challenges, Nikki shares personal anecdotes and insights that illuminate the essence of maternal love and resilience. Reflecting on her own experiences with her sons and the impact of rare diseases on their journey, Nikki celebrates the power of unwavering support and trust in nurturing deep connections with our children. Tune in to this touching tribute to the enduring bond between mothers and children, where simplicity reigns supreme and the beauty of being there shines brightest, especially on Mother’s Day.
CONNECT WITH NIKKI
Facebook
https://www.facebook.com/RareMamas1/
Instagram
https://www.instagram.com/Rare_Mamas/
Website
https://raremamas.com/
Email
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Shelly Meitzler is the Director of Community Support & Outreach at TSC Alliance, an internationally recognized nonprofit dedicated to Tuberous Sclerosis Complex (TSC), a rare genetic disorder causing tumors in various organs. With a personal journey spanning over two decades, Shelly's dedication stems from her own family's experience with TSC. As a parent of two children with TSC, Ashlin, and Mason, as well as daughter Mikenna, Shelly draws from her firsthand experience to offer invaluable insight and assistance to families navigating similar paths. Having volunteered in the TSC community for 14 years before joining the Alliance in 2017, she's committed to empowering families with resources and support to advocate for themselves and their children. Her unwavering drive and passion make her a powerful advocate in the TSC community. In this episode, hear from this passionate advocate who offers sage wisdom for all parents navigating the rare disease road.
EPISODE HIGHLIGHTS
Background about Shelly and her family All about Tuberous Sclerosis Complex Navigating the very different paths of two children with TSC How Shelly became involved with TSC Alliance and her role today Advice for parents interested in getting involved with a patient advocacy group or non-profit organization The importance of community building and involvement in rare disease advocacy Shelly’s learnings and advice for other rare parentsLINKS
TSC Alliance
https://www.tscalliance.org/
https://www.facebook.com/tscalliance
https://twitter.com/tscalliance
https://www.instagram.com/tscalliance/
CONNECT WITH NIKKI
Website
https://raremamas.com/
Instagram
https://www.instagram.com/Rare_Mamas/
Email
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RARE MAMAS RISING- EPISODE 36
Transforming Love Into Advocacy
with Rare Mama Nikki McIntosh
In honor of Rare Disease Day, we explore how a mother’s love transforms into impactful advocacy, empowering us to conquer challenges and ignite change. In this episode, discover the passionate spirit that fuels our fight and learn practical tips for channeling love into action. Don’t miss this episode as you gear up for advocating on Rare Disease Day and throughout the year!
LINKS & RESOURCES MENTIONED
National Organization for Rare Disorders (NORD)
EveryLife Foundation
Global Genes
Rare Disease Legislative Advocates (RDLA)
Rare Action Network
CONNECT WITH NIKKI
Facebook
https://www.facebook.com/RareMamas1/
Instagram
https://www.instagram.com/Rare_Mamas/
Website
https://raremamas.com/
Email
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RARE MAMAS RISING- EPISODE 35
Charting the Unknown: Navigating the New Year Amid Uncertainty
with Rare Mama Nikki McIntosh
The beginning of a new year provides a prime opportunity to establish goals, set intentions, and chart a course for the months ahead. However, the unpredictability of rare diseases can derail even the most thought-out plans. Navigating this delicate balance between planning and flexibility is a challenge. Join Nikki in this episode as she delves into strategies for navigating the uncharted territories of the new year. Through proactive approaches, practical tips, and personal stories, Nikki equips rare mamas to embrace uncertainties, allowing them to step into the new year with flexibility and openness.
CONNECT WITH NIKKI
Facebook
https://www.facebook.com/RareMamas1/
Instagram
https://www.instagram.com/Rare_Mamas/
Website
https://raremamas.com/
Email
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RARE MAMAS RISING- EPISODE 34
Navigating Grief and Healing with Normal Broken Author Kelly Cervantes
Kelly Cervantes is the author of Normal Broken: The Grief Companion for When it's Time to Heal But You're Not Sure You Want To. Kelly is an award-winning writer, speaker, and advocate best known for her blog Inchstones, where she shared the stress, love, and joy that came with parenting her medically complex daughter, Adelaide. Since Adelaide's passing, Kelly has continued to write candidly about her arduous and, at times, contradictory grief journey. She has been published in the Chicago Tribune, the Chicago Sun-Times, and Cosmopolitan, as well as quoted in the New York Times, CNN, and People. She is the current board chair for the nonprofit CURE Epilepsy and also hosts their biweekly podcast, Seizing Life, where she interviews scientists, doctors, and individuals affected by epilepsy. Kelly resides in Maplewood, NJ, with her husband, Miguel Cervantes currently starring in Hamilton on Broadway, their children, and their dogs. In this episode, Kelly holds our hands and compassionately guides us through grief and healing, allowing us to feel normal broken together.
EPISODE HIGHLIGHTS
Background about Kelly and her family The journey to writing Normal Broken, and the impact of writing through pain Navigating anticipatory grief while parenting a medically complex child Managing comparative and competitive grief What to do when you're struggling to feel gratitude Communicating your needs to your partner and understanding your partner's needs when they are different than your own Taking steps to find and build a community Kelly's learnings and advice for other rare mamasLINKS
Normal Broken
NormalBroken.com
Kelly Cervantes
Kellycervantes.com
Facebook.com/kellygc411
Instagram.com/kellygc411
Cure Epilepsy
https://www.cureepilepsy.org/
CONNECT WITH NIKKI
Website
https://raremamas.com/
Instagram
https://www.instagram.com/Rare_Mamas/
Email
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RARE MAMAS RISING- EPISODE 33
A Rare Adoption Story with Rare Mama Monica Poynter
In honor of November National Adoption Awareness Month, guest Monica Poynter shares her incredible rare adoption story. Monica is a proud mother to her sons Tag and Trey and daughter Ophelia. Tag and Trey live with a rare bleeding disorder called hemophilia A, in which the blood does not clot properly. With no family history of the condition, their biological son Tag's diagnosis in 2014 came as a complete shock. Fast-forward to 2020, Monica and her husband Josh grew their family by adopting Trey from an orphanage in China after being inspired by a magazine story about another family who had done the same. The brothers became instantly inseparable, bonded by adoption and their shared condition. Now, the family has another exciting addition with the birth of their daughter, Ophelia. In this episode, Monica shares her family's story of adoption, her journey caring for children living with the same rare condition, and words of inspiration for fellow rare mamas!
EPISODE HIGHLIGHTS
Tag's Hemophilia A diagnosis
How Monica and Josh rose to the challenge of rare parenting
The road to Trey's adoption
Caring for two children with rare diseases
Tag and Trey's bond
Advice for families interested in adoption
The addition of daughter Ophelia and life today
Monica's best learnings for other rare mamas
LINKS
Kentucky Hemophilia Foundation
https://www.kyhemo.org/index.php
Hemophilia Federation of America
https://www.hemophiliafed.org/
Hemlibra®
https://www.hemlibra.com/
CONNECT WITH NIKKI
Website
https://raremamas.com/
Instagram
https://www.instagram.com/Rare_Mamas/
Email
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Teri is a hard-working, rare mama fiercely fighting for her son Beau, who has a rare condition called Larsen Syndrome. When Beau was born, all of his major joints were dislocated, and his spine had a curvature. Beau’s had eight major surgeries over the last ten years, and Teri and her husband Dan have been advocating for him every step of the way. In this episode, Teri shares how she never stops showing up for Beau, how she’s learned to accept a life of uncertainty, and how she loves watching how bright Beau shines!
EPISODE HIGHLIGHTS
All About Larsen Syndrome The ways Teri rises to meet the challenges of being a rare mama Teri’s favorite quote that inspires her to keep going Where Teri finds hope Teri’s best advice for other rare mamasLINKS & RESOURCES MENTIONED
Teri Furey
https://www.instagram.com/terifurey/
Larsen Syndrome
https://rarediseases.org/rare-diseases/larsen-syndrome/
CONNECT WITH NIKKI
Facebook
https://www.facebook.com/RareMamas1/
Instagram
https://www.instagram.com/Rare_Mamas/
Website
https://raremamas.com/
Email
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RARE MAMAS RISING- EPISODE 031
Demystifying Differences with Author, Speaker, & Rare Mama Megan DeJarnett
Megan is an author, speaker, disability DEI educator, inclusion advocate, and mom to two boys. She was diagnosed with SMA at age two, but Megan didn't think much about her differences until she became the mother of a child with special needs. When Megan found herself having to answer questions about his differences, it sparked a passion in her to teach children the ways in which everyone is unique. Today, Megan is the organizational founder of No Such Thing, a company with a mission to help others redefine purpose by removing defining labels. She's the author of the children's books No Such Thing as Normal and Lovely as Can Be. In this episode, Megan shows us how she’s demystifying differences and spreading her life’s mission of living without limits!
EPISODE HIGHLIGHTS
Megan's experience growing up with a rare disease
How Megan's using her experience while parenting her sons
What drove Megan to write a book and start a company
The mission and goals of Megan’s company No Such Thing As Normal
How we as parents can promote diversity, equity, and inclusion
Megan's best advice for other rare mamas
LINKS & RESOURCES MENTIONED
Websites
nosuchthing.co
megandejarnett.co
Instagram
@nosuchthing.co
@megandejarnett
CONNECT WITH NIKKI
Website
https://raremamas.com/
Instagram
https://www.instagram.com/Rare_Mamas/
Email
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RARE MAMAS RISING- EPISODE 30
Back-to-School Tips with Rare Mama Nikki McIntosh
Back-to-school is a busy time for any household, and for families of children with rare diseases, back-to-school may come with even more preparations and to-dos. We are doing all the typical things like getting school supplies and clothing ready to go, but we’re also communicating with case carriers and ensuring services and supports are in place. Over the years, Nikki’s figured out a few systems to help rare families prepare for a new school year. These tips are tried and true from one rare mama to another. Check out this episode, and get some practical advice and a little encouragement as you get ready for back to school!
CONNECT WITH NIKKI
Facebook
https://www.facebook.com/RareMamas1/
Instagram
https://www.instagram.com/Rare_Mamas/
Website
https://raremamas.com/
Email
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RARE MAMAS RISING- EPISODE 29
Mid-Year Reset with Rare Mama Nikki McIntosh
Join Nikki for a little mid-year check-in. In this episode, Nikki guides you through a step-by-step process to help you reflect on your “why,” review the last six months, and reset your path for the remainder of the year. This episode hopes to serve as a thought starter, a jumping-off point, and a catalyst to help you reflect on where you’ve been and recommit to where you’re going!
CONNECT WITH NIKKI
Facebook
https://www.facebook.com/RareMamas1/
Instagram
https://www.instagram.com/Rare_Mamas/
Website
https://raremamas.com/
Email
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RARE MAMAS RISING- EPISODE 28
A Moving Mission with The Stiff Person Syndrome Research Foundation Founder and President Dr. Tara Zier
In 2017, Dr. Tara Zier, a graduate of the VCU School of Dentistry and Virginia Tech, a black belt in karate, and a mother of two, was forced to leave a twenty-year career in dentistry and stop the practice of karate due to Stiff Person Syndrome. Today, Zier is the founder and president of The Stiff Person Syndrome Research Foundation (SPSRF), which she established in 2019 to raise awareness and funds for better treatments and a cure. In 2021, The SPSRF was selected to receive a three-year “Rare As One” grant from the Chan Zuckerberg Initiative, and in 2022, Zier established a Medical Advisory Board, including neurologists from Mayo Clinic, Johns Hopkins Medicine, and others. Zier and The SPSRF have been featured in The Washington Post, Voice of America, ABC News in Washington, and various media outlets worldwide. In this episode, Dr. Zier exudes strength of purpose as she fights for treatment and better quality of life for those with Stiff Person Syndrome. She won’t be still as she moves forward on her mission!
EPISODE HIGHLIGHTS
All about Stiff Person Syndrome and why so many patients go through a diagnostic odyssey The Stiff Person Syndrome Research Foundation’s mission and future plans How Dr. Zier juggles motherhood, running The SPSF, and being a patient How Celine Dion’s Stiff Person Syndrome diagnosis elevated SPS awareness Where Dr. Zier finds hope and motivation How Dr. Zier has learned to put firm boundaries around her time and energy Dr. Zier’s best advice to other rare mamasLINKS & RESOURCES MENTIONED
The Stiff Person Syndrome Research Foundation
Website: http://www.stiffperson.org/
Twitter: https://twitter.com/TheSPSRF
Instagram: https://www.instagram.com/stiff_person_syndrome/
Facebook: https://www.facebook.com/TheSPSRF
LinkedIn: https://www.linkedin.com/company/the-stiff-person-syndrome-research-foundation/
Chan Zuckerberg Rare As One Initiative
https://chanzuckerberg.com/science/programs-resources/rare-as-one/
Celine Dion Announces Stiff Person Syndrome Diagnosis
https://www.ctvnews.ca
CONNECT WITH NIKKI
Facebook
https://www.facebook.com/RareMamas1/
Instagram
https://www.instagram.com/Rare_Mamas/
Website
https://raremamas.com/
Email
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RARE MAMAS RISING- EPISODE 27
Mother’s Day Episode - Enduring, Planting, and Blooming with Rare Mama Nikki McIntosh
In honor of Mother’s Day, pull up a chair and grab a cup of tea (or vodka) and join Nikki for a little heart-to-heart. She’s talking about motherhood and sharing a message that’s been on her heart. Sometimes in rare motherhood, there are seasons that feel like long winters. Nikki offers a few thoughts on how to approach these seasons as we await spring. Don’t miss this episode–it’s short and sweet but packed with an encouraging and meaningful message. Like a bouquet of freshly picked Mother’s Day flowers sent out to every single rare mama. Happy Mother’s Day from one rare mama to another!
CONNECT WITH NIKKI
Facebook
https://www.facebook.com/RareMamas1/
Instagram
https://www.instagram.com/Rare_Mamas/
Website
https://raremamas.com/
Email
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RARE MAMAS RISING- EPISODE 26
Driving Discoveries with Principal Investigator at the Center for Integrative Brain Research at Seattle Children’s Research Institute, Assistant Professor in the Department of Pediatrics, Division of Genetic Medicine at the University of Washington & Rare Mama Dr. Kim Aldinger
Dr. Aldinger is a Principal Investigator in the Center for Integrative Brain Research at Seattle Children’s Research Institute and an Assistant Professor in the Department of Pediatrics, Division of Genetic Medicine at The University of Washington. She received a BA in biology from Brandeis University, an ALM in psychology from Harvard University, and a Ph.D. in neurobiology from The University of Chicago. Dr. Aldinger has over 20 years of research experience applying neuroscience and genomics techniques to understand the impact of genetic changes on the development of brain structures and functions relevant to neurodevelopmental disorders. She is also the mom of twins Chloe and Grayson. Grayson has a rare genetic disease called MAST4. Dr. Aldinger understands the impact of a rare disease from both a professional, scientific perspective and a personal parent viewpoint. Her deep roots in research, coupled with her passion to contribute to the rare disease community, make her one to watch as she helps drive discoveries!
EPISODE HIGHLIGHTS
Dr. Aldinger’s path to becoming a brain researcher
The work Dr. Aldinger does as a Professor of Genetic Medicine and as a Principal Investigator
Grayson’s diagnostic journey and MAST4 diagnosis
How Dr. Aldinger co-founded the MAST Genes Research Foundation and the work she’s doing on MAST genetic mutations
How being a mom to a child with a rare condition informs Dr. Aldinger’s work
Advice for rare parents on how to approach research
Dr. Aldinger’s best learnings for fellow rare mamas
LINKS & RESOURCES MENTIONED
Kimberly Aldinger
https://www.seattlechildrens.org/research/centers-programs/integrative-brain-research/our-labs/aldinger-lab/
Twitter: https://twitter.com/kaaldinger
MAST Genes Research Foundation
Website: https://mastgenes.org/
Facebook: https://www.facebook.com/groups/780432716601479
Twitter: https://twitter.com/mastgenes
Seattle Children’s Research Institute
https://www.seattlechildrens.org/research/
The University of Washington
https://www.peds.uw.edu/specialties/genetic-medicine
American Epilepsy Society
https://aesnet.org/
Global Genes
https://globalgenes.org/
CONNECT WITH NIKKI
Facebook
https://www.facebook.com/RareMamas1/
Instagram
https://www.instagram.com/Rare_Mamas/
Website
https://raremamas.com/
Email
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RARE MAMAS RISING- EPISODE 25
Rare Mamas Rising Reflections with Rare Mamas® Creator, Podcast Host & Rare Mama Nikki McIntosh
To mark the 25th episode of the Rare Mamas Rising podcast, Nikki takes over the mic, purposefully pausing to reflect on the compelling conversations in the previous episodes. From a rare memoir author to rare disease TV show creators and writers, a rare podcaster, rare disease organization founders and directors, a nurse, a nutrition coach, a wellness expert, a social worker, psychologists, countless advocates, a few rare dads, and lots of rare mamas, the Rare Mamas Rising podcast guests have shared their stories openly, lending their expertise and learnings for us all. Though these guests have different backgrounds and their children have different rare diagnoses, this special episode highlights key characteristics they share and the importance they hold for us all. Check out this episode that investigates meaningful takeaways we can all use on our rare walk!
CONNECT WITH NIKKI
Facebook
https://www.facebook.com/RareMamas1/
Instagram
https://www.instagram.com/Rare_Mamas/
Website
https://raremamas.com/
Email
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RARE MAMAS RISING- EPISODE 24
Charging the Rare Community with The Disorder Channel Co-Founder, Global Genes Director of Community Engagement, Menkes Syndrome Advocate & Rare Dad Daniel DeFabio
At the age of 12 months, Daniel’s first child Lucas was diagnosed with the rare disease Menkes Syndrome. After adjusting his expectations of what raising a child might look like, Daniel began telling Lucas’s story with a short documentary film. That film led to Daniel Co-founding DISORDER: The Rare Disease Film Festival and later The Disorder Channel, both dedicated to spreading awareness for patient families facing rare diseases. One of Daniel’s stories about Lucas won the 2015 Global Genes Rare Patient Story Award. Daniel was a pioneer of original content online (now called web series) and co-wrote and co-produced the internet’s first animated series. He has created videos and marketing materials for bio-techs, hospitals, and most major movie studios, as well as American Cinematographer, PBS, TNT’s “The Closer,” and HBO’s “Curb Your Enthusiasm.” He has also served as a blogger in residence for Courageous Parents Network. Daniel currently works as the Director of Community Engagement for Global Genes. Engaging the rare community is his forte, indeed! Whether telling his own story or helping others tell theirs, Daniel is a magnetic force attracting, connecting, and charging the rare community.
EPISODE HIGHLIGHTS
The path to Lucas' Menkes Syndrome diagnosis The Disorder Channel and its mission Why telling our stories is important Global Genes programs and resources What being in the rare community means to Daniel Daniel's best learnings for other rare parentsLINKS & RESOURCES MENTIONED
Daniel DeFabio
https://www.thedisordercollection.com/danieldefabiospeaker
Menkes Syndrome
https://themenkesfoundation.org/research
DISORDER
https://www.thedisorderchannel.com
https://www.linkedin.com/company/disorder-the-rare-disease-film-festival
https://www.instagram.com/disorderrarediseasefilms/
https://www.facebook.com/rarediseasefilmfestival
Global Genes
https://globalgenes.org/
Courageous Parents Network
https://courageousparentsnetwork.org/
CONNECT WITH NIKKI
Facebook
https://www.facebook.com/RareMamas1/
Instagram
https://www.instagram.com/Rare_Mamas/
Website
https://raremamas.com/
Email
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RARE MAMAS RISING- EPISODE 23
Modeling Rare Advocacy with Thalassemia Advocate & Rare Mama Maria Hadjidemetriou
Maria was born with a rare genetic blood disease called Thalassemia, also known as Cooley’s Anemia. Since the age of two, Maria has received two pints of blood every fourteen days. Today, Maria is a mother, a real estate professional, and a fierce Thalassemia advocate speaking around the world and inspiring patients to live their best lives. Maria is a published author in the American Journal of Hematology and currently serves as an Executive Board Member for Cooley’s Anemia Foundation and as an Expert Patient Advisor for The Thalassemia International Federation. Most recently, Maria partnered with the global iconic beauty brand Maybelline as a model in the “We Speak” campaign for Disability Month. Maria is a model advocate, and in this episode, she speaks with strength, passion, and faith. She gives valuable insights about growing up with a rare disorder, learning to champion your disease, and living life without limitations or boundaries. She passionately shares ideas on how we can encourage our rare children to do the same!
EPISODE HIGHLIGHTS
Maria’s childhood and growing up with a rare disease The wisdom Maria’s mother passed along to her at a young age How Maria learned to love her disease Maria’s goal of turning Thalassemia into a household name Maria’s advocacy work and fighting for access and equality Maria’s strong faith and God’s hand in her life Maria’s best advice for other rare mamasLINKS & RESOURCES MENTIONED
Maria Hadjidemetriou
https://www.instagram.com/downtownmomnyc/
Cooley’s Anemia Foundation
https://www.thalassemia.org/
Thalassemia International Federation
https://thalassaemia.org.cy/
American Journal of Hematology
https://onlinelibrary.wiley.com/
The Disorder Channel
https://www.thedisordercollection.com/
CONNECT WITH NIKKI
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https://www.facebook.com/RareMamas1/
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https://www.instagram.com/Rare_Mamas/
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https://raremamas.com/
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RARE MAMAS RISING- EPISODE 22
Finding Meaning & Purpose with STXBP1 Foundation Director of Development & Rare Mama Melissa Hioco
After discovering her son Alex had STXBP1, a rare neuro-developmental disorder, and finding there was little information known about the disorder, Melissa Hioco found an online STXBP1 parent community and got involved. Today, she is a founding member and the Director of Development for the STXBP1 Foundation, a parent-led nonprofit leading the charge for a cure for STXBP1 disorders. Within this new world, through the pain and struggle, she has realized her purpose and has evolved into an unrelenting advocate for the STXBP1 community, supporting her fellow rare disease mamas and often turning to her faith for strength and inspiration. In this episode, Melissa exudes courage and grace as she discusses shifting perspectives, embracing this life, making the most of it, and finding meaning and purpose along the way.
EPISODE HIGHLIGHTS
Alex’s diagnosis and their family’s entry into the world of rare disease How Melissa forged forward after Alex’s diagnosis The ways Melissa rises to the challenge of being a rare mama The work Melissa does as the Director of Development for The STXBP1 Foundation Finding her purpose working with the STXBP1 Foundation Teaching others that every life is valuable Finding the gifts in rare life Melissa’s best advice for other rare mamasLINKS & RESOURCES MENTIONED
STXBP1
Website: https://www.stxbp1disorders.org/
Instagram: https://www.instagram.com/stxbp1_foundation/
Facebook: https://www.facebook.com/stxdisorders
CONNECT WITH NIKKI
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https://www.facebook.com/RareMamas1/
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https://www.instagram.com/Rare_Mamas/
Website
https://raremamas.com/
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