I want to share my journey to build the Sjögren’s and Lupus Foundation of Hawaii! It has been a quick three years (at least) and I have had so much love and support as well as many people to thank………
Blood, sweat and tears (yes tears) have been shed along this journey. I can look back now and smile and laugh at all that I’ve experienced along the way.
2012 was the year I really started thinking about the foundation. I realized that both autoimmune diseases have very similar symptoms, so it would be beneficial for all to invite those living with lupus to the lectures. We adjusted the focus to address the needs of both and I decided to change the group name to add lupus.
I eventually met with Dr. Jeff Sakai a few months later to discuss the needs as well as collaborate with him to provide resources to help those living with lupus.
Throughout 2012, I felt the foundation was definitely something I had given some serious thought to, but also realized I knew nothing about (and had no idea where to start) so I kind of put it on the back burner.
2013 rolled around and I had a little more information and interest in possibly setting it up. I decided that if I was serious about this then I better start doing some research! Between work, Sjögren’s and the lectures I was a little bit overwhelmed. I needed to slow down and learn to live with my new autoimmune disease first. I prioritized and again put the foundation on hold.
As the year progressed I thought about the foundation and how much it would help to provide resources and support as well as raise awareness. I started my research again and asked questions about what I needed to do to get started. I had many ideas and got excited about the possibility of making it all happen!
I began to focus on building the foundation and gave much thought to how I would make adjustments to give me more time to work on it. 2013 turned out to be a very important decision making year for me with lots of changes that helped me to really get the foundation up and running.
My plans were at a standstill at one point and I just dropped it for a while. I wasn’t moving forward and I continued to research. I eventually figured out it took a lot of paperwork as well as forming a board and gaining support to be successful in getting started.
Feeling a little frustrated, I put the foundation plans on hold until I could figure everything out. I was ready to move forward with my dream and had made all the changes I felt were necessary in my life to allow me the time and energy to work hard to get things moving.
I truly believe that everything happens for a reason! Kris Nakagawa contacted me in September 2014. He knew I had been trying to get the foundation started and he took me to meet Chris Mashiba, an attorney at Cades and Schutte. Chris was willing to support and help me get the foundation paperwork completed. After our meeting, I knew I was on the road to success and would hopefully have the foundation ready to go in 2015!
Shortly after I met with Chris, I needed to start recruiting board members. Dr. Miki Garcia and Dr. Jeff Sakai were interested in helping out and we discussed joining the board of directors.
Dr. Kara Yamamoto has been a huge support with the kids. Her willingness to help out by providing her knowledge and expertise on the medical advisory board has been so helpful!
I was in need of a treasurer and Kris was able to help me out once again! What a lifesaver……….he introduced me to Guy Sakamoto. I felt like everything was starting to fall into place. Guy had experience as well as great interest in helping the foundation too.
Dr. Kristine Uramoto was also excited to join the medical advisory board and brings a wealth of knowledge to the foundation!
Dr. Greg Schmidt and Dr. Scott Kawamoto have been helping out with lectures. Both continue to support those with Sjögren’s and Lupus by providing their expertise as part of the medical advisory board!
Jolene Kageyama is living with Sjögren’s syndrome and is the Administrator at Hale Ola Kino. Devyne Brooks is an eleven year old living with Lupus. She and her mom Halona along with Jolene were happy to be a part of the general advisory board to help provide the foundation with life experience!
Dean Yamamoto will also be an asset to the foundation sharing his knowledge as a member of the general advisory board.
My initial goal was to start the paperwork in January 2015. I hadn’t decided on the name yet so pushed it back to February. I have been amazed at how quickly and smoothly Chris has been able to get the paperwork completed.
We had our first board meeting on May 3, 2015 and continue to meet to work towards reaching our goals. WOW! I just launched the website today (8/27/15). I still can’t believe it’s up and running and this dream has really come true.
This has been one of the most amazing accomplishments in my life! I have so much respect for everyone who has helped me on this journey!
Huge MAHALO and LOVE to all of these amazing people! They have dedicated their personal time, energy and expertise to help me as well as worked very hard to make it all happen for those living with Sjögren’s syndrome and Lupus!
