Our GIST Wishes
We highlighted one GIST wish every day in the month of December, turning our hopes and dreams into visions for the future. Members and staff shared their heartfelt wishes such as:
“To be able to support patients and doctors around the world by using virtual technology to connect them with leading GIST experts, ensuring that have the knowledge necessary to beat this disease!” – Sara Rothschild, LRG Program Director
“My wish is for my daughter, Alia, to obviously be cured once and for all, as well as all the people who suffer with GIST. But until then, my wishes are for the research to advance in finding more targeted therapies with less harsh side effects, for the insurance agencies to work with their patients and approve them when they are seeking out a GIST specialist not in the network, and lastly, I wish for more funding and support that goes directly to the research for GIST.” – Marie Coleman, LRG Member and mother of Alia.
“I wish for strength, patience and support from family and friends for the GIST caregivers so that they have help coping with the stress of being a caregiver.”
– Mia Byrne, Member, LRG Board of Directors
“My GIST wish is for everyone to partake in a healthy lifestyle. We can all use the excuse that we work too much and there is not enough time in the day to worry about what we eat or if we work out. We need to be proactive if that headache or stomach pain does not go away. If we all take a little time every day to take care of our bodies, I think we can achieve a healthier lifestyle.” – Jess Nowak, LRG Office Manager
Wishes that are coming true:
“I hope that every GIST patient in Chile receives the treatment that he or she needs to keep on living.” – Piga Fernandez, LRG Global Consultant and Alianza GIST representative for Chile
On January 9th, Piga was present to witness the Chilean president sign a law assuring that the state would evaluate the funding of treatment for patients with rare diseases like GIST.
“My wish is to see every state in the US represented with one (or more!) LRG leaders so that no matter where they live, GISTers have a network close to home to lean on.” – Mildred Menos, LRG Assistant Program Director
We have four new state leaders: Carrie Callister, co-leader for Utah, Barbara Auw, our new representative for Georgia, Jeff Davis representing West Coast Florida, and Cindy Betz for Kentucky. There are still some states without representation, but we know our members will come through to continue to make this wish a reality.
Our 2015 Resolutions:
Making #GIST31 Wishes come true through action
Marisa Bolognese, aided by consultant Karen Kelley, led the LRG staff through a day of strategic planning in December. Creative ideas were shared through a number of team building and brainstorming exercises.
Our 2015 Organizational Goals are:
- To double patient survival within five years through education, outreach and advocacy efforts
- To leverage information gathering and technology
- Ensure long term viability of the organization through new initiatives
Task forces have been formed, and the major organizational goals along with the creative initiatives
will be implemented in the coming year to support our three key areas: research, patient support and
education, and advocacy.
Just a few of the many projects we will be looking to enhance in 2015 include:
- Virtual tumor board with the goal of providing greater access to treatment in the US and globally
- Developing a new Clinical Trials model
- Working towards the development of “GIST centers of excellence”
- Developing more opportunities for education through GDOLs, webcasts, etc.
We will periodically update the progress from our #GIST31wishes campaign.