Never Give Up: A Rare Disease Podcast

Season 1 Ep. 10 | Accepting Your Rare Disease Life

Acceptance... It's the foundation of mental health. Learning to be OK with what you have and not focusing on what you've lost.
But that's hard. Very hard.
Everyone in the rare disease community lives an unconventional life. Some of us grow up and only know life with our rare disease. Others receive a diagnosis later in life, and they know a life before and a life after that experience. But we all are presented with a life we didn't ask for, and sometimes struggle to accept.
This final episode of Season 1 is about my journey of acceptance... Learning to accept that my original dream in life - military service - was not possible because of my rare disease.
But my journey has taught me that the importance of perspective. I may not have the life I originally wanted, but I am learning to accept the life that I have.
And it is beautiful.
About Never Give Up: A Rare Disease Podcast
This is a storytelling podcast. I'm not interviewing guests or telling news that affects our community. Other podcasts do that extremely well. I just want to tell you some stories. Stories about hope. Perseverance. Self-worth. Self-care. Stories that hopefully inspire you to keep going. And to never, never, never give up.
Contact Kevin Alexander
Website: PKUJournal.com
Instagram: @kevinalexander_pku
Facebook: @pkujournal
Email: kevinalexander@pkujournal.com

Kevin’s Journal | Entry 1: 60 Years of Newborn Screening

I was diagnosed with PKU at 9 days old thanks to newborn screening. Newborn screening saved my life, but I know that not everyone has the same experience. This September, as we celebrate 60 years of newborn screening in the US, I’m reflecting on the many perspectives of newborn screening: joy, pain, and hope. We have come a long way, but we still have much work to do. Join me in raising awareness for newborn screening and ensuring that every baby has the opportunity to thrive.
This is part of a new, on-going series I'm releasing for this podcast called Kevin's Journal. It will be a while before I release another full season of longer episodes, but until then I'm going to keep releasing new content here—brief reflections on life and mental health from a rare disease perspective.
In this episode I mention a few organizations and resources that I'd like to share here:
PKU Journal
This episode first appeared on my blog. You can read that article here: https://pkujournal.com/60-years-of-newborn-screening/.
International Society of Neonatal Screening
I'm honored to be a member of this organization whose stated purpose is "to advance screening for neonatal and infant sicknesses and disorders, worldwide."
Their website: https://www.isns-neoscreening.org/.
Association of Public Health Laboratories (APHL)
I've partnered with APHL from the beginning of my newborn screening advocacy journey. You can learn more about them here: www.aphl.org.
In 2013 I produced a video for them called The Story of Newborn Screening, which is available on my website: https://pkujournal.com/the-story-of-newborn-screening/
Babys First Test
For more detailed information about newborn screening, including what is offered in your state, visit Baby's First Test: https://www.babysfirsttest.org/.
About Never Give Up: A Rare Disease Podcast
This is a storytelling podcast. I'm not interviewing guests or telling news that affects our community. Other podcasts do that extremely well. I just want to tell you some stories. Stories about hope. Perseverance. Self-worth. Self-care. Stories that hopefully inspire you to keep going. And to never, never, never give up.
Contact Kevin Alexander
Website: PKUJournal.com
Instagram: @kevinalexander_pku
Facebook: @pkujournal
LinkedIn: Kevin Alexander
Email: kevinalexander@pkujournal.com

Kevin’s Journal | Entry 2: Never, Never, Never Give Up

"Never, Never, Never Give Up." That's how I signed off each episode of this podcast in Season 1. In today's episode, I reflect on why that has become my motto—why it's a central part of my rare disease experience.
About Never Give Up: A Rare Disease Podcast
This is a storytelling podcast. I'm not interviewing guests or telling news that affects our community. Other podcasts do that extremely well. I just want to tell you some stories. Stories about hope. Perseverance. Self-worth. Self-care. Stories that hopefully inspire you to keep going. And to never, never, never give up.
Contact Kevin Alexander
Website: PKUJournal.com
Instagram: @kevinalexander_pku
Facebook: @pkujournal
LinkedIn: Kevin Alexander
Email: kevinalexander@pkujournal.com

Kevin’s Journal | Entry 3: When You Never Have To Say Goodbye

The friendships that develop in the rare disease community are special. No matter where we live in the world we can experience a connection to someone else in our community that is hard to explain to others. Today, I'm reflecting on something I realized after the last big rare disease conference I attended.
About Never Give Up: A Rare Disease Podcast
This is a storytelling podcast. I'm not interviewing guests or telling news that affects our community. Other podcasts do that extremely well. I just want to tell you some stories. Stories about hope. Perseverance. Self-worth. Self-care. Stories that hopefully inspire you to keep going. And to never, never, never give up.
Contact Kevin Alexander
Website: PKUJournal.com
Instagram: @kevinalexander_pku
Facebook: @pkujournal
LinkedIn: Kevin Alexander
Email: kevinalexander@pkujournal.com

Kevin’s Journal | Entry 4: Finding Your Rare Disease Community

In this episode, you will hear 27 voices of those living with PKU from around the world. We are adults with PKU, parents, spouses... those in some way affected by this rare disease. And we reflect on what can happen in our lives when we find our rare disease community.
Many of us affected by a rare disease live in isolation. That was true for the first 31 years of my life. But when I encountered my rare disease community—the PKU community—my life changed forever.
Recently, I attended the 2023 European Society for PKU and Allied Disorders Treated as Phenylketonuria (ESPKU) Conference in Birmingham, UK. While there I recorded this episode of the podcast. And it is truly an international perspective. I spoke with people from the United Kingdom, Germany, Spain, The Netherlands, Portugal, Ireland, Turkey, Lithuania, North Macedonia, Italy, Austria, the Czech Republic, Croatia, Poland, and the United States.
Although we come from different places in the world, we are one global community. PKU knows no borders.
Sponsorship Message
This experience was made possible by my friends at Ajinomoto Cambrooke. You will hear from one of the founders, Lynn Paolella, in this episode. Apart from her work at Cambrooke, she is first and foremost a PKU mother and advocate.
I wrote an article recently about my experience with Cambrooke products. You can read that article here: Traveling with PKU Formula.
About Never Give Up: A Rare Disease Podcast
This is a storytelling podcast. Normally, I don't interview guests or tell news that affects our community. Other podcasts do that extremely well. I did this time because I couldn't travel across the world and attend such an event without capturing as many perspectives as possible.
I just want to tell you some stories. Stories about hope. Perseverance. Self-worth. Self-care. Stories that hopefully inspire you to keep going. And to never, never, never give up.
Contact Kevin Alexander
Website: PKUJournal.com
Instagram: @kevinalexander_pku
Facebook: @pkujournal
LinkedIn: Kevin Alexander
Email: kevinalexander@pkujournal.com

Kevin’s Journal | Entry 5: In This Together

I'm still thinking about the 2023 ESPKU Conference and will be for quite some time. I gathered so many interviews that I had enough material for another long episode, but I'm still working on it. So, in the meantime, I wanted to share a brief episode with you... While at the conference, I spoke on one of the panels of PKU Adults. I spend a lot of my time advocating for all of the various perspectives within the PKU community but at the end of the day... I am someone living with PKU, and there are issues that matter to me on a personal level. So, here are some of my thoughts on issues affecting PKU adults.
And an important reminder that, even though we have different perspectives on this PKU or rare disease life, we are still all in this together.
Sponsorship Message
My experience at the 2023 ESPKU Conference was made possible by my friends at Ajinomoto Cambrooke. They have been friends since the beginning of my PKU advocacy journey, and their support enabled me to capture some truly magical moments and stories. You heard some of those in the previous episode called Finding Your Rare Disease Community. I'll share more soon in a follow-up episode. Until then... I wrote an article recently about my experience with Cambrooke products. You can read that article here: Traveling with PKU Formula.
About Never Give Up: A Rare Disease Podcast
This is a storytelling podcast. I'm not interviewing guests or telling news that affects our community. Other podcasts do that extremely well. I just want to tell you some stories. Stories about hope. Perseverance. Self-worth. Self-care. Stories that hopefully inspire you to keep going. And to never, never, never give up.
Contact Kevin Alexander
Website: PKUJournal.com
Instagram: @kevinalexander_pku
Facebook: @pkujournal
LinkedIn: Kevin Alexander
Email: kevinalexander@pkujournal.com

Kevin’s Journal | Entry 6: One Global Community

This is my second episode from the 2023 ESPKU Conference. The first one featured interviews with 26 people affected by PKU from around the world. In this one, we'll spend some more time with 8 of those people. They include 5 adults with PKU, two parents, and one spouse. And they each have a different perspective to share about life with PKU.
The previous episode was meant for a general rare disease audience, as with my other episodes. But in this one, we'll also dig deeper into some issues that are specific to PKU. Still, if you live with another rare disease I hope you are able to extract some principles that will help you in your life.
My goal with these episodes has been to remind us all that PKU has no borders. We are one global community.
Resources
There are a few resources that I mention in this episode.
My PKU Life
This is the film that changed my life and opened my world up to a whole new reality... Life with my rare disease community. It's my story of living with PKU, at least for the first season of my life before PKU, newborn screening, and rare disease advocacy.
Never Give Up: A Rare Disease Podcast
This show is available on all podcast platforms, but I also post the episodes to my website. Some of the posts include behind-the-scenes reflections about that episode. The newer ones have transcripts available. I've been asked if the show can be translated, and that's not something I can do for logistical reasons. But, take the text from these episodes and have it translated. I believe these stories are universal, and I do not want language barriers to be the reason people can't access them. I just ask that you reference me as the author.
"Kevin's Journal | Entry 4: Finding Your Rare Disease Community"
The previous episode from the ESPKU conference featured 27 voices of people affected by PKU from around the world (26 interviewees plus myself). I do recommend listening to it first before this one.
For Katy
In 2013 I produced this film about a girl born with PKU who did not receive newborn screening. She was diagnosed at 13 months. It's a reminder of the importance of timely, accurate, and comprehensive newborn screening for every baby born in the world.
TEDx Talk: "The Empowering Role of Advocacy: A Parent's Perspective | Bernadette Sheehan Gilroy"
This incredible TED Talk by my friend Bernadette is a great introduction to PKU and rare disease advocacy from the parent's perspective. Watch this and you'll know why I'm incredibly honored to call Bernadette a friend.
Caffeinated Caregivers
Erica and Alyssa helped me rethink my views on caregiving. I'm not a parent, and I used to think that only parents or guardians were caregivers. But they helped me realize that advocacy is a form of caregiving. Advocacy is a huge part of my life, and their inclusive view helped me keep this important perspective—advocacy is about caring for people. Check out them out: @caffeinated_caregivers. And be sure to check out their podcast as well!
Once Upon A Gene
Connecting with Effie Parks and her amazing podcast Once Upon A Gene has helped me feel in my heart what I know to be true—I am part of a rare disease community that is much larger than I can imagine. And at the ESPKU conference, I mentioned something I've heard her say: "Community is a form of treatment." If you don't follow her, you definitely should.
Facebook: OnceUponAGene.podcast
Instagram: @onceuponagene.podcast
Sponsorship Message
This episode was made possible by my friends at Ajinomoto Cambrooke. They have been friends since the beginning of my PKU advocacy journey, and their support enabled me to capture some truly magical moments and stories. You heard some of those in the previous episode called Finding Your Rare Disease Community. I'll share more soon in a follow-up episode. Until then... I wrote an article recently about my experience with Cambrooke products. You can read that article here: Traveling with PKU Formula. If these episodes have meant something to you please reach out to Cambrooke on social media and let them know!
Facebook: AjinomotoCambrooke
Instagram: ajinomoto_cambrooke
About Never Give Up: A Rare Disease Podcast
This is a storytelling podcast. Normally, I don't interview guests or tell news that affects our community. Other podcasts do that extremely well. I did this time because I couldn't travel across the world and attend such an event without capturing as many perspectives as possible.
I just want to tell you some stories. Stories about hope. Perseverance. Self-worth. Self-care. Stories that hopefully inspire you to keep going. And to never, never, never give up.
Contact Kevin Alexander
Website: PKUJournal.com
Instagram: @kevinalexander_pku
Facebook: @pkujournal
LinkedIn: Kevin Alexander
Email: kevinalexander@pkujournal.com

Kevin’s Journal | Entry 7: Dare to be Different

Today is PKU Awareness Day in the US. Normally on this day, I use it as an opportunity to share information and statistics to raise awareness of my rare disease. But today, I'm doing something different.
I'm sharing two stories—one ancient and one modern—that help us accept the beauty in difference. Because, as much as we might like to deny it, our rare disease life sets us apart. We are different than those around us. But that difference can be a source of strength.
A Message About Global Genes
In the episode, I mention an incredible resource for the rare disease community. Many of you might be familiar with Global Genes. But for those who might not be, connecting with Global Genes is a great way to feel part of the larger rare disease community.
The PKU community in particular has a larger population than many other rare disease communities, and in my case, I've often found it tempting to stick within my community, not reach out, and not connect with others in the broader community. But the more I reach out—the more I engage with others who might not share my rare disease—the more I receive hope.
I highly recommend their Facebook group as a place to meet others who are also on this rare disease journey.
Website: GlobalGenes.org
Facebook Group: Global Genes Rare Disease Community
About Never Give Up: A Rare Disease Podcast
This is a storytelling podcast. I'm not interviewing guests or telling news that affects our community. Other podcasts do that extremely well. I just want to tell you some stories. Stories about hope. Perseverance. Self-worth. Self-care. Stories that hopefully inspire you to keep going. And to never, never, never give up.
Contact Kevin Alexander
Website: PKUJournal.com
Instagram: @kevinalexander_pku
Facebook: @pkujournal
LinkedIn: Kevin Alexander
Email: kevinalexander@pkujournal.com

Kevin’s Journal | Entry 8: People are Priceless

Sometimes these reflections on life that I share aren’t really about the rare disease experience. They’re just about life. So, whether you’ve experienced grief in the past or you’re grieving now, this episode is for you.
This is a heavy episode. Life is like that sometimes. While some are celebrating others are in sorrow. But it's through our human connections that we find our way through to the other side.
 
About Never Give Up: A Rare Disease Podcast
This is a storytelling podcast. I'm not interviewing guests or telling news that affects our community. Other podcasts do that extremely well. I just want to tell you some stories. Stories about hope. Perseverance. Self-worth. Self-care. Stories that hopefully inspire you to keep going. And to never, never, never give up.
Contact Kevin Alexander
Website: PKUJournal.com
Instagram: @kevinalexander_pku
Facebook: @pkujournal
LinkedIn: Kevin Alexander
Email: kevinalexander@pkujournal.com

Kevin’s Journal | Entry 9: Looking Back, Looking Ahead

As we begin a new year, I'd just like to take a moment and share a brief message. I've got a lot of content planned for 2024, including a new season in May. But for now, I'd just like to say thank you to everyone who has listened to this show. I'm not big into New Year's resolutions, but I do believe in taking time during this season to sit down, reflect on life, and consider what lies ahead.
And when I slow down I find my gratitude... For all of you.
So, today I'm sharing a bit of my heart with you as we begin the new year.
About Never Give Up: A Rare Disease Podcast
This is a storytelling podcast. I'm not interviewing guests or telling news that affects our community. Other podcasts do that extremely well. I just want to tell you some stories. Stories about hope. Perseverance. Self-worth. Self-care. Stories that hopefully inspire you to keep going. And to never, never, never give up.
Contact Kevin Alexander
Website: PKUJournal.com
Instagram: @kevinalexander_pku
Facebook: @pkujournal
LinkedIn: Kevin Alexander
Email: kevinalexander@pkujournal.com