The Little Giants Foundation has been working tirelessly since their inception in 2014 in Nebraska to educate families, doctors, and the public about SIOD while raising critical funding for SIOD research. They appreciate each and every one of their donors and wouldn’t be where they are without their support. Recently they closed out a $50,000 telomere project for SIOD and have started another crucial project for this rare genetic life limiting- multisystem disease. With donor and sponsor contributions, they are one step closer to accomplishing their recent neurological studies project. They are over halfway to their $100,000 pledge at Stanford with Dr. David Lewis’ SIOD research lab. Gifts go towards this pledge to uncover revolutionary research happening with the brain that has the potential to help even more than our SIOD population.
Below is an interview with Erin Koesters, Executive Director of The Little Giants Foundation.
Who is the primary group that you serve with your organization?
Funds raised are poured back into the foundation for contribution towards the research and testing to help Emily Koesters—my daughter–and other children with SIOD now and in the future. We serve roughly 100 people at our major event alone with an outreach of so many more who are made aware through our efforts, publicity and local sponsorship. There are only 50 children in the world currently diagnosed with SIOD. Of those, ten are in the United States, one of whom is our daughter and only child living with SIOD in Nebraska and the surrounding states. SIOD is a very difficult disease to diagnose. There may be many more children who are affected since the life expectancy is only nine years old.
What makes your organization different from others with a similar focus?
Emily is the only child in Nebraska living with SIOD. We may be a smaller non-profit, but we are mighty with an outreach across the globe. As the leader, director, and mom to Emily, I’m a direct liaison between other families, doctors and the SIOD researcher.
What are some of your main fundraising events and when are they held?
We have a partnership with Nebraska Community Blood Bank for many years now where we host a blood drive in Gretna outside of Gretna Insurance Company in July around Emily’s birthday each year to pay it forward to our local hospitals. In the fall we have our main event, which changed to a golf tournament this year from a fall festival. This giving season and past, we are blessed with matching funds that we do in conjunction with ShareOmaha and our affiliate, Midlands Community Foundation. We are open to and have had other smaller events throughout the year depending on who wants to be the driving force to raise funds for us.
Who are the main members/leaders of your organization?
I am Executive Director and Board President and am an active member of Center Sphere meetings and events. In addition, Joe Koesters is VP, Renee Jaeger is acting treasurer, Peggy Eggers is secretary and we have Charisse Engels, Riley Herring, and Reese Jaeger. Taylor-Jo is honorary as well as Emily’s grandma. Stefanie Larsen is our newest addition. We look forward to growing relationships with our board and our foundation.
Are there any local businesses that have been especially helpful in sponsoring or supporting your organization?
No Limits Tree Service, Meylor Chiropractic, Stage Law Office, Illuminate Insurance Solutions, The Syndicate Agency, and Burmeister Construction.
How do you get the word out about your organization?
Social media, newsletters, postcards, emails, TV, newspaper, our website, speaking engagements, and networking.
Where do you see your organization in 5 years? 10?
Our five-year plan is to have a full time paid Executive Director, more recognition in the communities around us and the state of Nebraska, to raise over $250,000 a year, and to have our own office space. In ten years we foresee additional paid staff, reaching our $1,000,000 goal mark and publishing my hybrid memoir on the SIOD journey and resources while speaking around the country on SIOD.
If someone asked how they could help your organization, what would you tell them?
I would tell them to first of all SHARE. Share our website, our social pages, and any stories you see on us. We never know where a shared bit of info can take us on our journeys and it doesn’t cost anything. I would also tell them that I am available for speaking engagements to share our story and inspire others to do and become more. Of course, what non-profit doesn’t like someone to sponsor or donate as well??
What are the biggest needs of your organization right now?
Awareness and education are the biggest needs. We are a smaller non-profit, yet we have so much potential and such advancements in science happening that now is the time to act and get in on this revolutionary and exciting research. One can do this through their generous gift giving.
Is there anything else you’d like to add?
In addition to studies on endothelium, we plan to determine why SMARCAL1 deficiency affects other tissues/cell types, e.g., T cells of the immune system, podocytes of the kidney.
With the support of Little Giants Foundation, we have developed induced pluripotent stem cells (iPSCs) that will allow us to study for the first time the importance of SMARCAL1 gene function in tissues/cell types that are affected in SIOD.
With these tools, we may finally be able to shed light as to why blood vessels develop arteriosclerosis, kidney cells stop functioning, and T cells of the immune system do not develop normally in SIOD.
Although the human body is extremely complicated, just as with car repair, the first step to fixing a problem is to identify exactly what it is, i.e., diagnostics.
Our hope is that all of these abnormalities reflect a common upstream mechanism that may be correctable by a single small molecule drug therapy.
