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Meet Trailblazer Christina Waters

Today we’d like to introduce you to Christina Waters.

Christina, please share your story with us. How did you get to where you are today?
I grew up in San Diego as a farm girl and showed sheep at the Del Mar Fair every summer. I also loved to read and anything to do with animals. I knew from the beginning I wanted to be a scientist and I often collected bugs, lizards and more to my sister’s demise. At first, I thought I would be a conservation geneticist and while going to school at SDSU I had an internship working on Badland buffalo genetic diversity.  And then later I interned at The Scripps Research Institute in La Jolla where I learned to manually sequence the DNA of patients. After graduation, I was accepted into the Genetic PhD program at the University of California, Davis. There I found that my passion was understanding the genetics of human disease with hope to contribute to therapeutic solutions.  Once I graduated I did two postdocs one at University of California, Berkeley and the other at CalTech as a Howard Hughes Fellow trying to decide if I wanted to work in  Academics or Life Science Industry. I chose Industry and have worked for large pharmaceutical companies, lead medium pharma, started biotech’s and lead large groups in innovation centers living abroad in Europe.

These career opportunities around the world gave me great practical experience but most importantly it showed me the importance of balance and health and how this plays a crucial role in work performance and life happiness. I learned that no matter where I was traveling to, living or passing through, it is so important to have ground, a place of home and balance where one can recharge and create. I have found this right back home where I grew up.  I have lived in the same house in Encinitas almost 20 years, although not consistently over time, and have seen it grow from sleepy surf village to the hip scene it is today. I love it here for the beauty, access to the water and around town, endless yoga practices. to the spirituality of the people that also enjoy our village.
When I am in Encinitas, I love home projects and am constantly creating new ones at my house which is in what was Avocado Acres. I have a dream of creating a way to self -sustain and currently farm Tilapia feed by worms that are used to vermipost my organic vegetable kitchen waste. I also have an organic garden. I still travel too much, and live in Boston too, for it to work seamless, but one day…  It is however, these things that keep me balanced and recharged while traveling around the world as SVP and GM of the Global Rare Disease Program at WuXiNextCODE and CEO/Founder of my non-profit RARE Science, Inc.

Overall, has it been relatively smooth? If not, what were some of the struggles along the way?
Starting any new endeavor from scratch is challenging. Creating new avenues that streamline and are counter to existing models are met with resistance. However, with passion, commitment, tenacity to stay the course of what you believe can lead to success. I think it is always important to continually evolve thinking based on learnings that are from self-experience and also from surrounding yourself with people that have more experience than yourself. Integrating these learnings – self, mentors, colleagues, a great team and in our case most importantly patient families, have helped me be a better leader. Evolving our idea of RARE Science has led to many opportunities and also enables us to keep current with matching needs of the rare community we serve.
To be sure we still have obstacles, and as we overcome obstacles there are more to overcome as we grow and work on scaling our capabilities.

I think having a mentor or mentors is key in addition to building a network of colleagues for both career and personal support. At RARE Science, we support women in STEM and have many young women volunteers gain experience in various activities from operations to data management. We offer a fun way to get great experience, give back to community, network with many companies and people with diverse backgrounds.

Alright – so let’s talk business. Tell us about RARE Science – what should we know?
As a geneticist working at the Genomics Institute of the Novartis Research Foundation in La Jolla, I learned how challenging it was to understand how our genes contribute to disease and how hard it was to develop therapies. I have always been passionate about working in rare and neglected disease which have even more obstacles due to lack of funding and the critical amount of biological data to study these small patient populations. It is even more desperate of a situation for kids with rare disease. Even though a disease maybe rare, collectively there are approximately 250 Mio kids that have a rare disease. I speak to many families lacking diagnosis for their kids or sometimes misdiagnosis since diseases can look the same but have very different causes. I thought that if we could bring families with kids of the same disease together, we could start identifying what is the same and different and create a basis of understanding that does not exist. We also wanted to use research to understand the biology in the hope that we could potentially repurpose currently approved drugs as a more immediate solutions when there is none.
In February 2015, the same month as rare disease day, RARE Science, Inc officially became a non-profit with a mission to accelerate more immediate therapies for kids. We work directly with patient families to help them navigate the ways to build world – wide community, collect critical amounts of information and drive research on the way to therapeutic development.
Our efforts to help families starts with our unique and novel RARE Bear Program. RARE Bears, one of a kind teddy bears, are gifted to kids around the world to bring smiles, support and awareness to specific diseases. Most importantly this program unites communities around the globe, so we have enough patients to start to understand the biology of the disease setting us on a path to improved therapies. We have gifted almost 5000 RARE Bears across 50 countries and represent about 1000 different diseases.
What is so unique about our RARE Bear Program is that it is community driven by the RARE Bear Army of bear makers (close to 3600 in all 50 states including Puerto Rico and 15 countries), community service of companies (such as Thermo Fisher), other non-profit organizations (like the Girl scouts – we even have a patch!). We have community partners like the Ecke and Mission Valley YMCA that provide the program with in the offerings of their organizations. We even have programs in senior living and memory care units. Absolutely everyone can play an instrumental part in helping drive forward research for kids rare disease and this is how it works:

To join the RARE Bear Army, sewists sign up on our website and order a tag of authenticity and feet fabric which is made by our partner Spoonflower. They also order a RARE Bear Pattern from Simplicity (our own pattern and we get a portion of the proceeds to help with our operations of the process). Since quilters (second largest hobby to golf with an estimated 30Mio people around the world) have lots of left over fabric, they use the left-over pieces to make one of a kind bears for one of a kind kids. The unstuffed bear, what is called a bear skin, is sent back to San Diego where through community service volunteers they are stuffed and sewn up.
We receive 200-500 RARE Bear requests a month that specifying the child’s favorite colors and things, age and gender. On the third Sunday of every month volunteers come to help us match the RARE Bears with the request and help package them for shipping.
Once a RARE Bear makes it home to its child, the parents send us a picture of the child and the RARE Bear in its new home. Each bear on the tag of authenticity has a serial number which allows us to match the bear with the bear maker and we can send a picture back to them. We also post the pictures on our website so that if you worked on bear and recorded the number you can enter on the website and see that bear and the child it went too. We sometimes do not get pictures back or get a picture of just the bear in its new surroundings – it is up to the parents to decide.

The next step is to work closely with the different rare disease groups and continue building a path forward to understand the biology of the disease and how the children are similar and different with the aim to build common understanding of these rare diseases on the way to new therapies that will help them.

To make a donation to send a rare bear home to a child: https://www.rarescience.org/donate/

Do you feel like there was something about the experiences you had growing up that played an outsized role in setting you up for success later in life?
Growing up on a farm, we had lots of responsibilities and needed to do them independently. We raised Suffolk sheep for market and had a plethora of other livestock. Having the ability to have responsibility and experience consequences early on was important for me. I learned early on to be a critical thinker and be independent. Also, on a farm, you see the vulnerability and preciousness of life which impacted me greatly in wanting to understand it and protect the quality of it eventually in for our most vulnerable patient populations, kids.

Contact Info:

  • Website: www.rarescience.org
  • Email: info@rarescience.org
  • Instagram: RARE_Science
  • Facebook: @RAREScience
  • Twitter: @RARE_Science


Image Credit:

RARE Science

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