Within our organization we talk a lot about paying it forward. In the rare disease community there is not enough time or money to waste. We have tried to build a collaborative community that learns and then shares to help others not waste time and money making the same mistakes. We are so fortunate to be connected with amazing, selfless individuals who despite their personal challenges and struggles are so helpful with others on similar journeys. A culture of sharing and learning from each other. It is powerful and amazing.
Asa part of my series about the women in wellness, I had the pleasure of interviewing Nicole Boice. Nicole is the founder of Global Genes, one of the world’s leading rare disease advocacy organizations. Global Genes connects, empowers and inspires the rare disease community by giving hope and resources to more than 350 million people worldwide affected by a rare disease. Celebrating a decade of hope serving the rare disease community, Global Genes has reached over six million patients and advocates in 18 countries.
Thank you so much for doing this with us Nicole! What is your “backstory”?
NB: I founded Global Genes in 2008 after being personally touched by a rare disease through a friend whose son struggled for more than four years to find a diagnosis. After seeing what they went through just to get a diagnosis, I became determined to connect rare disease patients and advocates with resources, support, and hope.
Can you share your top three “lifestyle tweaks” that will help support people’s journey towards better wellbeing?
- Meditation (the ‘Calm’ app Rocks).
- Nikki, my Medium and spiritual advisor (everyone needs one).
- Peloton (ah.mazing — especially Cody, Alex and Ally).
Sorry that was 4.
When it comes to health and wellness, how are you helping people making a bigger impact in the world?
NB: Within our organization we talk a lot about paying it forward. In the rare disease community there is not enough time or money to waste. We have tried to build a collaborative community that learns and then shares to help others not waste time and money making the same mistakes. We are so fortunate to be connected with amazing, selfless individuals who despite their personal challenges and struggles are so helpful with others on similar journeys. A culture of sharing and learning from each other. It is powerful and amazing.
None of us are able to achieve success without some help along the way. Is there a particular person who you are grateful towards who helped get you to where you are? Can you share a story about that?
NB: You are absolutely right, I look at this entire journey as a series critical inputs from mentors, friends, patients, business associates, etc. that have all played a very strategic role in Global Genes’ success. I must give a tremendous amount of credit and props to our board of directors, or medical and scientific advisors, and other advisors and partners. All, to this day, continue to be there to advise, help, support, give constructive criticism and a good whack upside the head when needed. But they have all done so with love and support, and for that I will be forever grateful.
If you could start a movement that would bring the most amount of wellness to the most amount of people, what would that be?
NB: Group meditation in various locations. The energy that is created when a group puts their mind towards something is so powerful, so energizing, emotional, loving, inspiring, motivating. . . I could go on. I have been in situations where an entire room is encouraged to open their hearts to envision love surrounding the room, each individual, filling the room and exploding into the universe. And in that moment, I will never forget the feelings I felt, the emotions, it was mind blowing.
How have you used your success to bring goodness to the world?
NB: I hope I have done this. At least that is my goal. I left my career to start Global Genes to make a difference for others. I wanted to bring support, education, etc. to the families impacted by rare disease, but I also wanted our organization to bring them a sense of family, of belonging, of love, of hugs and some levity to their already overwhelming situation. So my hope is that I have been able to bring that to families, and that it has made their days or situations even just a bit better. I have dedicated myself to this cause.
What is your “I Thing I Wish Someone Told Me Before I Started” and why?
NB: “The Journey is hard, really hard.” Not that it would have changed my mind, but I think it would have helped me navigate the challenges a bit better.
Do you have any “girl-crush” in this industry? If you could take one person to brunch, who would they be? (Let another “woman in wellness” know that you respect her as a teacher and guide! )
NB: I am totally in love with some of my new friends at Miraval Wellness Resort. I have had the good fortune of annual trips with family and friends. With each being so meaningful on so many levels. A shout out to some of the spiritual advisors there and therapists, all who have had a major impact on me and my wellness. Life Changing.
Sustainability, veganism, mental health and environmental changes are big topics at the moment. Which one of these causes is dearest to you, and why?
NB: Mental Health. It impacts so many people for different reasons. It is something that I believe needs to be talked about. My family has a history of mental health issues, and I have seen how difficult it is to cope with. Our rare disease community also struggles with mental health as part of the disease or in trying to cope with the weight of rare disease on families. All in all it is more prevalent than anyone really understands, and my wish is that we can break stigmas, teach people to accept and not judge and help people thrive and flourish.
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