(1) Tell us a little about yourself?

My name is Samra R. Savioz. My education is in the fields of physiology, mental health therapy/counselor and in nutrition.  I am the mother of two beautiful daughters, Baela (age 15) and Remi (age 13- will be 14 on 5/20) and a wife.  Prior to having a family I worked on my research and practicum at WPIC (Western Psych.Institute & Research Center).

Post family- I became a stay at home mom and had planned on going back to work in a professional capacity after the birth of Baela.  However, my plans changed when I found out that I was pregnant again, less than 4 1/2 months after Baela was born with Remi.  Again, planning on returning to work – one day!

After Remi’s birth, it became very clear that any plans for returning to work or at a “job” were to be considered later…if ever again.  Remi was born with a host of complex medical complications that would go undiagnosed and/or misdiagnosed for 8.5 years.  During those years, I only chose to focus on finding an answer and keeping her alive.  My professional identity suddenly became much less important.

It was in 2008, when we decided to bring Remi to an out of state hospital for further tests and review of her medical records.  Her condition seemed to be deteriorating and we had no answers or reasoning for such a decline.  Our trip landed us at the Cleveland Clinic where Remi was seen by many different specialist.  Soon after, she was diagnosed with a rare brain disease, Glut1 DS.

Shortly after the diagnosis was confirmed, I learned that the NIH (National Institute of Health) ceased funding for research.  It was then that I realized what my job and duty was…I then realized that I needed to “create/establish” a funding source for this disease, for other diseases affected by the same mechanisms and for my daughter and family!  I decided to create an organization, a 501 (c)3 non-profit.  I named it the “Remi Savioz Glut1 Foundation.”  The organization was approved by the IRS in 2009 and the mission and the fundraising and awareness of the org. would start in January of 2010.  The mission of funding research for Glucose Transporters and Glucose Metabolism.  The mechanisms that affect treatments of many diseases including cancers, epilepsy, diabetes, Alzheimer’s and Glut1 DS.  A legacy of hope!

 

(2) What caused you to form the Remi Savioz Glut1 Foundation and what is it about the it that keeps you involved?

The foundation is a source of hope for me, and for others.   If I can do nothing more than create a legacy of hope for my daughter and help many other disease sufferers, then my job will be satisfying.  If I had one thing, and one thing only, it would be knowing that my daughter will outlive me.  That is my focus and my passion.  That is what keeps me coming back!

 

(3) Describe how a mentor or someone you look up to has helped you mold your life?

As far as a mentor goes…I really have lived much of my life independently and have relied on myself more than anyone else.  My best teacher has Remi.  Remi has taught me to appreciate life.  She has taught me what love really is.  She continues to share lessons with me and motivates to be a better person.  I am blessed to have her in my life.  I am blessed to have my family -

 

(4) What makes you happy?

What makes me happy?  I am happiest when I see hope in my daughters eyes.  I am happy when I am out for a long run or bike ride and there is a blue sky above.  I am happy when I feel supported by my friends and family and when the work I do helps others to have happiness.

 

(5) If you had $1million, what would you do with it?

If I had a million dollars, I would continue to fund Glucose Transporter research opportunities for scientists that are located across the globe that do not otherwise share their individual findings.  This is mainly because of their working for different nonaffiliated universities and other institutions.  However, bringing together such researchers can have an enormous benefit to the disease communities at large.  RSG1 is currently funding the first ever Glucose Transporter conference in July of 2012.  This conference is composed of leading benchmark researchers both domestic and international.  All specializing in disease research that will benefit people suffering from cancers, epilepsy, diabetes, Alzheimer’s and Glut1 DS. Due to funding constraints our guest list is limited to 20.  But, with a million dollars….the possibilities are endless!   I would love to have the money to make the conference larger and invite more scientists and PhD students to come and learn and listen.  I believe this is essential to finding treatments and cures for diseases.

 

(6) What type of music do you listen to, and what song will make you get up and dance?

I have to admit, I like a wide variety of music.  I like some old school punk rock and alternative music.  I also, like to get down with some grateful dead- 

 

(7) What are 3 things we would find in your refrigerator?

(Hhahaha)- egg whites, vegetables, and fruit.  (A real risk taker!  )

 

(8) What has made you as successful as you are?

 

What makes me successful is knowing that one day…maybe I will be a success.   I keep myself very goal oriented and focused.  I strive to keep myself functioning steadfast and forward and surrounding myself by good people.

 

(9) How do you define success?

I will know I have succeed, when I have brought together an organization that can provide hope and help.  I would love to say, “when I find a cure for Remi.”  The truth is that I will feel successful if I do everything in my power to “Make A Difference” for her and help others during my journey.

 

(10) Any decisions that you’ve made that you’ve regretted?

I truly have no regrets.  I look at regretful situations as being learning experiences.  I chose not to live with regrets.  I try to make good decisions and think before I act.  When I make a decision that would cause regret, I remember the action and correct it by trying not to repeat the situation.   Changing the approach-  Less regret.  The only regret- is not having a diagnosis sooner.

 

(11) What do you like to do on the weekend?

I would love to go on a bike ride, or a run.  I also, love to go out for lunch or go to the park with my kids and dogs.

 

(12) What is your ideal vacation?

Vacations are so very different these days, as travel is difficult with Remi.  If I could just go to the airport and whisk myself away, I’d love to backpack across Europe or bike ride.  I’m not very good at sitting still so it definitely would be a vacation with activities! 

 

(13) What were some of your favorite childhood memories?

My favorite childhood memories are with my grandfather, Louis J. Berger.  He used to take me to the mountains past Ligonier on the weekends and we’d stop for a picnic lunch.  He told me that the Jolly Green Giant lived there.  LOL!  I honestly thought that we’d see this Jolly Green Giant walking through the woods on one of our weekend trips.  I never saw him but, it sure made those drives back and forth to the mountains exciting!

 

(14) How would your best friend describe you?

How would my best friend describe me… She may say that I’m a bit compulsive, and crazed.  That a lot of my strength comes from my daughters.  She did say, “My heart is as big as my drive.”  “Strong, driven and hugely compassionate.”