SPP Supporting Content Entries

Organization Date Submitted Submitted by Email
Glut1 Deficiency Foundation March 26, 2022 Glenna Steele [email protected]

 

I. Overview of the Organization

Overview of the Organization:

The Glut1 Deficiency Foundation was formed originally in 2009 – born of a desire for families to get together to meet, share, and learn from one another. Glut1 Deficiency is such a rare diagnosis that many families, and especially our Glut1 children, had never had the experience of meeting others who share this journey.

The Yahoo Health group was our original meeting place, and as our relationships evolved, we began talking about how good and helpful it would be if we could meet in person. Jen Lazar organized our first family meeting in Chicago, which quickly grew into a full-fledged conference when researchers and experts eagerly accepted our invitations to come join. The knowledge, experiences, and emotions shared there impressed upon us the need to keep having these gatherings. As relationships developed with these experts, we soon learned that there were very few sets of eyes and very few dollars focused on researching Glut1 Deficiency – and we wanted to help change that.

A leadership group began to emerge, and we received our 501 (c)3 public charity designation from the IRS in July of 2011 with Lloyd Holleman, Jen Lazar, Keri Meyers, Glenna Steele, and Greg Stoddard as the founding board members. We have continued to grow our service programs and our impact, have expanded our Board of Directors, and have added both a Medical Advisory Board and Scientific Advisory Board to help guide our endeavors. In 2017, the G1DF appointed its first ExecutiveDirector as an effort to meet growing needs and obligations more efficiently and effectively. In May of 2021, Sandra Ojeda was added as Science Director to oversee science and research activities.

The Glut1 Deficiency Foundation has a principal address in Evansville, Indiana and is incorporated in the state of Indiana. The operational headquarters are in Owingsville, Kentucky.  While located in the United States, the G1DF serves an international patient community for the rare disease officially known as glucose transporter type 1 deficiency syndrome.

Currently there are eight board members, all parents of children with Glut1 Deficiency, and a staff of one full time Executive Director, one part time Science Director, one part time Special Projects Director, and one part time Science Advisor.  Additionally, there are several volunteers who help with various special projects for the G1DF.

What is your APPROVED Vision Statement?

We dream of a brighter future where Glut1 Deficiency will be easy to diagnose early, treat effectively, and cure completely.

What is your APPROVED Mission Statement?

The Glut1 Deficiency Foundation is a nonprofit patient advocacy organization dedicated to improving lives in the Glut1 Deficiency community through its mission of increased awareness, improved education, advocacy for patients and families, and support and funding for research.


 

II. Plan Monitors

Plan Monitor #1:

Maria Rebbecchi  /  Board Member – Education Director

Plan Monitor #2:

Glenna Steele  / Executive Director


 

III. Sharing Our Plan

1. WHAT will you tell stakeholders after you approve the final strategic plan?
  • We have strategically mapped out a plan to amplify our mission!
  • We met, we shared, we learned about how to plan for the future and better serve our community!
  • We’ve dug deep to analyze our work and to create a plan for growth and greater impact!
2. WHO will we tell about our strategic plan?
  • Patients and Families
  • Donors
  • Researchers and Clinicians
  • Industry
3. HOW will we tell stakeholders about our plan?
  • Feature a blog post on our website about the strategic plan,
  • reference it in newsletters,
  • social media posts, and
  • other communications with the community.

 

IV. Stakeholder Feedback Summary

Complete the following statements:

To inform the strategic planning process, the organization intentionally sought feedback from the 14 community stakeholders, including patients, families, clinicians, and researchers. We engaged stakeholders using emails, survey.

Essential takeaways from stakeholders include the following:

What do you value about our organization?

  • sense of community the Foundation engenders
  • connects and informs the community
  • safe, helpful, trusted, and timely support to patients and caregivers
  • thorough and easily accessible information
  • access to experts
  • awareness and education efforts
  • Foundation is strong and organized
  • Foundation run with honesty, integrity, accountability, and dedication

 

Where would you like to see growth or improvement?

  • more emphasis on supporting ketogenic diet as therapy treatment
  • provide a specific Glut1 dietitian
  • provide a platform for clinical trial participants to share experiences
  • more information about clinical trials
  • more resources for residential/home services; transition and adulthood
  • more research on milder spectrum
  • more research for developing a therapy or target and finding a cure
  • expand research to encourage young investigators
  • international network of Glut1DS groups
  • spread more awareness through large media channels

 

What are some hopes you have for the future of our organization?

  • support researchers for better or supplemental treatments and new trials for them
  • new treatments allowing for ketogenic diet freedom
  • build alliances with other foundations to increase funding
  • continue to foster connections between scientific communities involved in Glut1 research
  • increased funding
  • foundation growth and increased community support for the foundation
  • continued focus on early detection
  • more doctors and researchers educated through conferences
  • all undiagnosed get diagnosed and can become part of Glut1 family

 

What projects, programs, or accomplishments would you like to see in the next 3-5 years?

  • create a Glut1DS residential community
  • close collaboration with INKS in education projects
    early detection testing/newborn screening
  • Glut1 screening to be standard for any child with seizures
  • social programs group for adult Glut1 patients
  • Glut1 keto camp
  • create job opportunities for those with Glut1
  • more research studies to find a cure
  • more conferences world-wide to find undiagnosed, more international meetings
  • attend medical conferences to spread awareness, educate medical teams
  • keto calculator where user can enter own food nutrition facts
  • educational classes on Glut1DS
  • more standardized info for medical professionals caring for Glut1 (adults and peds)
  • outreach for recruiting young investigators
  • mentorships/internships for young clinicians to treat Glut1 patients
  • more research and clinical trials

 

What are some potential roadblocks?

  • lack of funding
  • limited time, money, availability of all stakeholders
  • decreased energy in spreading awareness
  • symptomatic patients who do not have positive genetic testing results
  • low general awareness about Glut1 in general population
  • physicians not being open minded and lack of individualized medicine
  • dependency on Glut1 families for funding and fundraising
  • payors not wanting to cover tests for diagnosis and treatment costs
Do you intend to compile stakeholder feedback and include it as an attachment of your strategic plan?

Yes

Participants in the strategic planning process:

Jason Meyers, Rob Rapaport, Debbie Stoddard, Maria Rebbecchi, Erin Meisner, April Breen, Glenna Steele, Sandra Ojeda, Tom Rebbecchi, Keri Meyers Board President, Board Secretary, Board Treasurer, Education Director, Advocacy Director, Fundraising Director, Executive Director, Science Director, Scientific Advisory Board Member, Parent, Founding Board Member, Parent [email protected], [email protected], [email protected], [email protected], [email protected], [email protected], [email protected], [email protected], [email protected], [email protected]

 

Time frame the new strategic plan will cover:

January 1, 2022 to December 31, 2025 – 3 years

Fiscal Year the new strategic plan will cover:

calendar year

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