We are thrilled to introduce you to our HI Global Registry (HIGR) Ambassadors!
These dedicated individuals are all strong advocates for people with HI and strive to improve awareness and outcomes for those living with HI. HIGR Ambassadors know that participating in the HI Global Registry (HIGR) is an important way for people with HI and their caregivers to make sure that their voices are heard in HI research. Our ambassadors are passionate about spreading awareness and encouraging others in the hyperinsulinism community to join the registry and complete the surveys.
Every family’s HI story is unique, and HIGR provides an opportunity for you to share your or your child’s experiences with HI to contribute to research efforts and a better understanding of this rare condition.
Meet the HIGR Ambassadors below and read what they have to say about why they are passionate about HIGR and the impact you can have by joining the registry.
Anna Nicolaou is a young adult with HI from the United Kingdom and Cyprus. Anna shared with us: “I joined the HIGR Ambassador program as I’d like to become an advocate for change; for individuals affected by hypoglycemia. I’m particularly interested in working towards improving healthcare policies and access to resources for those affected by hypoglycemia. Through the Ambassador program, I’d also like to raise awareness for the condition and help reduce negative stigma and misconceptions. Only by working together will we be able to make a positive change for individuals living with hypoglycemia.”
Kimberley Pfaff is an HI mom from the United States. Kimberley shared with us: “I volunteered to be a HIGR ambassador for my son. He’s made it clear for a long time now that he wants to use his disorder for good, to make a difference, to stand out. As an unknown genetic, his whole life has been way more “I don’t know” answers than he can handle, and it’s not enough. Inspired by his motivation, I joined to help gather more data, collect more friends with shared experiences, to grow the support network for him and kids like him, who really need it. Maybe, if we work hard enough, in the future he’ll hear ‘I don’t know’ a little less. Sounds a little less lonely to me.”
Meina Jia Sandal is an HI mom from Denmark and China. Meina shared with us: “As a CHI parent, I joined HIGR to help advance research and improve care. I want to support the CHI community, bring more families together, and make our voices heard.”
Whitney Witchley is an HI mom from the United States. Whitney shared with us: “It’s an absolute honor to be invited to be part of the inaugural group of HIGR Ambassadors. I cannot think of a better way to use my voice and my platform as a mother of a child with HI to raise awareness of the importance of research & development for this life changing rare disease. HIGR is key to the success of better care, better treatments, better medications, and improvement in the quality of life with HI. By using our voice and utilizing HIGR we can be the reckoning force that paves the way for the future of life with Congenital Hyperinsulinism.”
Sandra Melo is an HI mom from Portugal. Sandra shared with us: “In the full bag of knowledge that HIGR holds, there can be an answer to a better future for my son. Being a HIGR Ambassador is my way of contributing to spread this word.”
Elizabeth Cooper is a young adult with HI from the United States. Elizabeth shared with us: “I joined the HI Global Registry because I believe in the power of our stories. By sharing my experience with hyperinsulinism, I’m helping to raise awareness, improve care, and support research that could lead to better treatments for everyone affected by HI. It’s a way for all of us to connect, learn, and make a real difference in the future of this community.”
Erin Greaves is an HI mom from Australia. Erin shares with us: “For many years now, I’ve made it my mission to raise awareness for HI so that I can try to prevent another family feeling as isolated as we did in that first 12 months after diagnosis. Becoming a HIGR Ambassador is a chance to do this on a much larger scale. Spreading awareness, gathering information for research and development, all with the support of an amazing community as we work towards the ultimate goal…..a cure for HI!”
Martina Sena is an HI mom from Italy. Martina shared with us: “I’m really honored to be part of the Ambassador team. As a CHI mom, I have joined HIGR to contribute to research and add a small piece to the puzzle of this rare disease. Every child experiences this long journey in different ways, so we all should share our stories.”
Kiersten Cocuzza is an HI mom from the United States. Kiersten shared with us: “I am so excited to be a part of the HIGR Ambassador group! I am hoping to help other parents find the benefits of continued and re-established participation. The future of hyperinsulinism research and care are in our hands as parents, it’s time to share our voice!”
Maureen Bakker is an HI mom from the Netherlands. Maureen shared with us: “I’m trying to build a community in the Netherlands and to be available to new parents in our country. Being part of the HIGR group gives me the connection to the rest of the world and be able to make a difference. Every story we share has the power to change the future for someone; so please join HIGR!”
Marie-Claire Archibold is an HI mom from the United States. Marie-Claire shared with us: “I’m honored to join CHI’s Ambassador Program for the HI Global Registry because I believe in the importance of raising awareness and supporting our community. HIGR is an incredible tool for contributing to advancements that improve understanding, treatment, and support for individuals and families impacted by this rare condition. The data we contribute helps researchers understand the condition better and develop more effective treatments. By participating in this registry, we can help create a brighter future for those affected by HI.”
Felicia Huffman is an HI mom from the United States. Felicia shared with us: “HIGR is a no brainer; it just makes sense to join in on something that can provide such valuable information on the life of individuals with HI to so many important resources and outlets. I find deep value in what HIGR is doing and can see how beneficial it is for our future. If my daughter can fight every day for a better life and positive outcomes for herself, we all should be doing the same collectively for everyone like her!”
If you are interested in becoming an ambassador, please contact [email protected]
