One of our favorite things about publishing Macaroni Kid is the chance to connect with other moms in our community. Often times these connections inspire us and remind us of the ability of one person to make a difference. It is with this in mind that we launch a new article series called Mom on a Mission. Our hope is to introduce you to some amazing moms living right in our communities who not only are doing unique and wonderful things but also deserve to have some attention brought to their mission.
I recently crossed paths - virtually - with Kristen Brantner, and her story was so compelling that I just knew I had to find a way to share it. The first thing you need to know is that Kristen's daughter was born with a Rare Disease called Hermansky-Pudlak Syndrome (HPS). It affects multiple organs in the body. It is characterized by Albinism (lack of pigment), vison impairment (legal blindness), bleeding (platelet dysfunction), bleeding in the digestive track, Pulmonary Fibrosis (scarring of the lungs) and can affect the heart and kidneys. It was that diagnosis and the subsequent knowledge that every day will be affect by this disease which led her to create RAREevents. Kristen Brantner is on a mission to make a difference in the future of rare disease. Please get to know this local mom a little better by reading her answers to our questions.
I recently crossed paths - virtually - with Kristen Brantner, and her story was so compelling that I just knew I had to find a way to share it. The first thing you need to know is that Kristen's daughter was born with a Rare Disease called Hermansky-Pudlak Syndrome (HPS). It affects multiple organs in the body. It is characterized by Albinism (lack of pigment), vison impairment (legal blindness), bleeding (platelet dysfunction), bleeding in the digestive track, Pulmonary Fibrosis (scarring of the lungs) and can affect the heart and kidneys. It was that diagnosis and the subsequent knowledge that every day will be affect by this disease which led her to create RAREevents. Kristen Brantner is on a mission to make a difference in the future of rare disease. Please get to know this local mom a little better by reading her answers to our questions.
What is your MISSION? What do you want to accomplish?
My goal is to make a difference in the future of this rare disease. I want to create a presence with RAREevents and put rare disease on people’s radar. I know I have to start small but my dream would be that this grows into a well-known name.
The HPS Network has worked for almost 22 years to raise awareness, provide support, and fund research. When money is raised for the HPS Network, it is truly going to the cause and funding the research to learn more about Hermansky-Pudlak Syndrome. Even though it affects a smaller population of people there is so much to gain by researching HPS because it affects multiple organs in the body. If doctors are able to learn more about the skin, eyes, blood, digestive tract, lungs, kidney and heart all from one Rare Disease, they can increase the understanding and find answers for wide variety of health problems that are more common and affect a huge population of people.
The need for funding and awareness led me to create RAREevents, a new division of the HPS Network. My idea is to create opportunities for the community to participate in fun events or activities and as a bonus proceeds will benefit the Rare Disease: Hermansky-Pudlak Syndrome.
What inspired/encouraged you to create RAREevents? Is there one specific moment when you knew this was what you wanted to do?
Two years ago when our daughter was diagnosed this one-in-a-million rare disease, we felt very isolated and overwhelmed because no one around us could relate. We had to come to terms with the fact that Hermansky-Pudlak Syndrome will drastically affect our daughter’s life every day. Thankfully we found the HPS Network and had the opportunity to attend the HPS Conference which is held every year in New York. At last we were surrounded by people who truly understood what we are going through. During the conference, we heard real stories and met the doctors working on behalf of this rare disease. We came home from that trip and knew our lives would never be the same.
Two years ago when our daughter was diagnosed this one-in-a-million rare disease, we felt very isolated and overwhelmed because no one around us could relate. We had to come to terms with the fact that Hermansky-Pudlak Syndrome will drastically affect our daughter’s life every day. Thankfully we found the HPS Network and had the opportunity to attend the HPS Conference which is held every year in New York. At last we were surrounded by people who truly understood what we are going through. During the conference, we heard real stories and met the doctors working on behalf of this rare disease. We came home from that trip and knew our lives would never be the same.
I knew in that moment that I had to get involved in any way I could. As a mom, I cannot sit back and hope someone else is taking care of it. I need to be a part of the solution. I am not doing this just for my daughter; I am doing this for everyone impacted by HPS. The sad and scary reality is we have already lost too many people to this disease. There are many that are in the final stages of this and there is still no cure. I can’t make this disease go away, but I can try to make a difference.
How did your life before children influence the mom you are today?
I always knew I wanted to be a mom, and I would imagine what it would be like. But never in a million years would I have thought we would be facing a lifelong, one-in-a-million rare disease.
My family is everything to me, and I was raised to have compassion for others. I always knew I wanted to help people. When I was in school, I spent several years working with the special needs program and kids being integrated into the schools. In college I specialized in Family studies. I worked as an orthodontist assistant for many years and loved connecting with and caring for my patients. In the past few years, I've served as a birth doula, assisting families as they welcome their new baby into this world. And now, I have the privilege of working with the HPS Network and the opportunity to make a real difference in the future of Hermansky-Pudlak Syndrome.
What part do your children play in your current mission? What lessons/values do you hope your kids are learning?
The truth is my children are with me every step of the way - we are in this together. They understand why we are doing this and love being a part of it. My children are learning so much about helping others, and they understand that we are raising money to help people who need a cure. My daughter who has the rare disease is very confident and proud of who she is; she sees having HPS as good thing because it makes her special. We have really embraced the idea of being rare as a positive thing. Last year at her school we were able to share our information and set up a display in the hall - the “Dare to be Rare” board asked kids to write what made them “Rare.” It was so amazing to see the board covered with things that kids felt made them rare, unique, special, and one-of-a-kind. It was another opportunity to shine positive light on our “rare” situation.
What lessons/values are you learning through this process?
It may sound funny but I feel so lucky to be on this journey. This rare disease will present many difficult challenges ahead of us, but if we were not on this journey I would not have met the people in the HPS community. I am surrounded by some of the most amazing people. They possess a strength that most cannot even understand; to live with a lifelong disease that significantly impacts their everyday life and still remain so positive. I feel I was chosen to be her parent because this is something we can handle and I can help make a difference.
What can we do to support RAREevents?
We are appreciative of the opportunity to spread the word about RAREevents and our cause. we are hoping to get people interested in what we are doing. We will always need people to participate in our events - whether it’s attending an event or even more by being a sponsor, donating an item or volunteering to help. At times it feels discouraging to make a presence when people often choose the more common “causes” to support, but reality is those are also the causes that are raising millions, even billions of dollars. By sharing our story and raising awareness of this rare disease we are hoping people will consider supporting HPS.
My website: www.hpsRAREevents.org
Upcoming Events:
Movies for a CURE – October 10, December 19, February 6, April 9
Family-friendly movie night at the Sammamish EX3 Teen & Rec Center
Family-friendly movie night at the Sammamish EX3 Teen & Rec Center
Sippin to Save Lives – October 24
Wine tasting event at Northwest Cellars in Kirkland; perfect excuse for a Mom's Night Out or date night!
Rare Disease Day – State House Event - February 2016
Rare Disease Day – State House Event - February 2016
