Michelle Hopkins of Kandon Unlimited: “I would say “Try to make a positive difference” “

I would say “Try to make a positive difference,” because you will never know how it could impact other people. Maybe you help just one person or maybe you go viral and change the world! As part of my series about young people who are making an important social impact”, I had the pleasure of interviewing […]

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I would say “Try to make a positive difference,” because you will never know how it could impact other people. Maybe you help just one person or maybe you go viral and change the world!

As part of my series about young people who are making an important social impact”, I had the pleasure of interviewing Michelle Hopkins.

Michelle Hopkins is a 17-year old high school senior, singer/songwriter, and rare disease advocate. Born with an incurable rare disease called MPS1, Michelle is helping to change the world by sharing her voice through music and advocacy to raise awareness for the entire rare disease community. Considering 10% of our population has a rare disease, “rare” is more common than most people know. Finding cures will help improve the quality of all of our lives. One thing that frustrates Michelle is how often people assume she has a mental disorder because she uses a walker to help her walk and has a support dog to assist her daily. Michelle is a determined and intelligent straight A honors student who is courageously taking the stage to help people open their hearts and minds. Her recently released album “Have Hope” is a soundtrack for determination, love, strength, and hope for humanity.

Thank you so much for joining us in this interview series! Before we dig in, our readers would like to get to know you a bit. Can you tell us a bit how you grew up?

I grew up in Long Beach, California with my mom, my dad and my brother Christopher. Growing up, I spent a lot of time in the hospital; some of it I remember and some of it I do not, but all of it had it challenges. I have been to a ton of doctor appointments! Being diagnosed with a rare incurable disease, mucopolysaccharidosis, or MPS1 for short, has had a big influence over my life, but I try not to have it be the only thing in my life. I am just a normal teenager with normal hopes and dreams. I love to swim, play games, watch TV, draw, and sing. When I was younger, I used to take dance and gymnastics classes. I love animals and we have always had at least a cat and a dog. Today, we have two big gray cats and I have a service dog named Kramer who helps with my mobility. My family loves to travel and we have gone a lot of places in the U.S. and internationally. I especially like when we stay at the Great Wolf Lodge; my brother and I love their waterparks!

People who meet me today do not realize that I used to be able to walk and even run, but now I use a reverse-kaye walker to help me get around. Having a rare condition can be quite lonely, but thankfully I have an amazing family and special family friends who are always cheering me on. I chose to focus on the things I can do and can achieve. I spend a lot of time and energy on being a great student and I was honored to be recognized as the Most Inspiring Student two times, once in elementary school and once in middle school. I was even invited to come back to my elementary school to give a speech on determination and perseverance.

Is there a particular book or organization that made a significant impact on you growing up? Can you share a story or explain why it resonated with you so much?

I am a teen advocate for the National MPS Society. We are an organization that wants to shine a light on rare diseases to help find a cure to better MPS patients’ lives. To help with my advocacy and do something that I love — singing — I am hoping to raise awareness through my album, “Have Hope” and my website, MichelleHopkinsRare.com. I have been able to demonstrate youth leadership through the years in a number of ways, but one of my favorite experiences and most impactful was going to Washington, DC with my mom and speaking with representatives on Capitol Hill. To create change, we have to speak up to decision-makers who are voting on issues that matter. I am not afraid to speak up for myself or others, and I hope through my example, my peers are encouraged to be leaders and speak up, too.

How do you define “Making A Difference”? Can you explain what you mean or give an example?

I define making a difference as taking action in hopes of improving someone’s life, even if it is just one person. A good example of making a difference is how the National MPS Society, through its advocacy efforts, was able to encourage politicians to pass newborn screening tests for MPS1. Now newborn babies with this rare disease are able to be diagnosed as soon as they are born and receive treatment as soon as possible. For me, it took longer, because the newborn screening test for MPS1 was not available when I was born and we had to wait for a doctor to figure it out — a difficult process. The members of the MPS Society have made a difference for children born with MPS1.

Ok super. Let’s now jump to the main part of our interview. You are currently leading an organization that aims to make a social impact. Can you tell us a bit about what you and your organization are trying to change in our world today?

Through my music and my website, MichelleHopkinsRare.com, I am raising awareness for rare diseases, including MPS, to help improve the lives of those affected and find cures for these conditions. Awareness is the first step. I am speaking up and singing about rare diseases to create more awareness. Many people don’t know that one out of every 10 people suffer from a rare disease and there are zero cures for any of them. Since there are so many rare diseases, most don’t really get talked about at all. But treatments for one rare disease often help others and new treatments being researched right now have the potential to help more common conditions and possibly find many cures.

Can you tell us the backstory about what inspired you to originally feel passionate about this cause?

Well, my main inspiration is that I have MPS1. I had a bone marrow transplant when I was a baby and have had many surgeries since then. I have been active with the National MPS Society my entire life and I have met many families that have been impacted by MPS; I want to help them and anyone in the future who may suffer from it. If more people know about the condition, the chances are better that they will help improve a family’s life or help find a cure.

Many of us have ideas, dreams, and passions, but never manifest it. They don’t get up and just do it. But you did. Was there an “Aha Moment” that made you decide that you were actually going to step up and do it? What was that final trigger?

My friend, Kathryn Cloward, has been a big motivator for me. I have always loved to sing and I have always wanted to help those affected by rare disease, but she knew how to do it. She is a musician and writer. As she and I became friends, she planted the seed of maybe we can do more to help. We began writing songs together, and she produced my “Have Hope” album. Kathryn has helped in so many ways, I can’t thank her enough. Maybe the answer is to get help, ask a friend or family member, start small, and keep going.

Many young people don’t know the steps to take to start a new organization. But you did. What are some of the things or steps you took to get your project started?

I didn’t do it by myself! I just mentioned Kathryn’s huge contribution, but my parents and my brother helped, and my grandparents and my whole family support my efforts. Of course, everyone in the MPS community has inspired me and the National MPS Society has helped and supported me. You need to look for people who are energetic and motivated to help. They need to be positive and encouraging. Once you find these types of people and get them on your team, it becomes easier to create awareness through social media or create art or even raise money.

Can you share the most interesting story that happened to you since you began leading your company or organization?

Recording my music in the recording studio was terrific. My family came and watched me sing in the booth and after I was done, my dad and brother were able to sing background vocals for a couple of songs. Then to get more sounds in one song, Let’s Cheer Each Other On, my whole family including grandparents got to do clapping. It was a lot of fun.

Can you share a story about the funniest mistake you made when you were first starting? Can you tell us what lesson or take away you learned from that?

I got a chance to perform my music at the world-famous Whisky-A-Go-Go and I had no idea what to expect. It turns out there is no easy way to get up on their stage. I use a reverse-kay walker to help me walk and stand, so it was especially difficult for me to hop onto the stage. When I was called up to sing a song, I had to have my mom walk me across the stage and my dad deliver my walker and then I could sing with the band. I always try to go with the flow. Things are never going to be perfect, but in the end I got to sing on that world-famous stage! Life is not easy, but when you show up and take a chance, great things can happen!

None of us can be successful without some help along the way. Did you have mentors or cheerleaders who helped you to succeed? Can you tell us a story about their influence?

Kathryn Cloward and my family have been big influences, but the people I think about when I listen to my music are my MPS friends. Alison, Sydney, Jenna, Laynie, and Maddy all have gone through much of the same things I have and we will always have that bond. I’m not sure if there is any more powerful motivation than the thought that you might be able to help your friends.

Without saying specific names, can you tell us a story about a particular individual who was impacted or helped by your cause?

This woman helps me in every step of my life, pushing me and encouraging me even though sometimes it’s tiring. She is certainly my mentor and motivator. She won’t let me slow down or do anything less than I am capable of doing. She tries to push me beyond my comfort zone and I am better for it. (Thanks, mom!)

Are there three things the community/society/politicians can do to help you address the root of the problem you are trying to solve?

The three main things to help the rare disease community are awareness, time, and money.

Start by learning a little about rare disease. Chances are you have been affected by a rare disease. Which one? Is there an organization supporting it? How can you help?

Donate you time. Volunteer to help a rare disease organization. Everyone in our community needs more help. Do what you can to help.

Try to donate to a rare disease organization. Most are looking for cures and support research that is very expensive. Money is also used to support those affected and their families.

With awareness comes the ability to encourage politicians to help with new laws that will speed up the development of new drugs and treatments and potentially lower to cost of those who suffer.

Fantastic. Here is the main question of the interview. What are your “5 things I wish someone told me when I first started” and why? (Please share a story or example for each).

I didn’t realize how much work it was going to be to create an album and grow my social media presence. For my songs, I had to practice the lyrics many times before I could remember them well enough to go into the studio the record them professionally. Not that it wasn’t worth it, but singing along to music in the car or in the bathtub is a lot easier than being in the studio with a bunch a people counting on you to sing the words right.

For social media, I follow people online all the time, but I didn’t have a clue about how to do it for myself or even get started. Thankfully, I’ve had some help to get me going and I’m learning a lot as I go.

I wish I knew if my efforts are making a difference. It is easy to have big ideas about helping people or making a difference, but in the beginning, you don’t know if it will make a difference. And that uncertainty can keep you from doing anything at all. If I was sure I could make a difference, it would be easier to be energized each day. But no one gets that assurance. You have to find motivation wherever you can find it and be satisfied that even helping a little bit will be better than nothing.

If you could tell other young people one thing about why they should consider making a positive impact on our environment or society, like you, what would you tell them?

I would say “Try to make a positive difference,” because you will never know how it could impact other people. Maybe you help just one person or maybe you go viral and change the world!

Is there a person in the world, or in the US with whom you would like to have a private breakfast or lunch with, and why? He or she might just see this, especially if we tag them. 🙂

I would choose Dove Cameron because I have grown up watching her TV shows and movies on the Disney Channel. I probably began my love of singing by singing to her music. She helped me become a singer and has been one of my role models.

How can our readers follow you online?

Instagram: michellehopkinsrare

Facebook: michellehopkinsrare

YouTube : michellehopkinsrare

Website: MichelleHopkinsRare.com

This was very meaningful, thank you so much. We wish you only continued success on your great work!

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