Dear HI Community,
The first edition of CHI’s 2023 HI-Lights has landed in your inbox today – a quarterly newsletter from Congenital Hyperinsulinism International to celebrate our HI community and update you on events, projects, and other exciting developments in the world of HI.
The first half of 2023 has flown by for our CHI community – so let’s look at what we’ve accomplished and what we look forward to in the future.
Rare Disease Day
Rare Disease Day (RDD) was February 28 – a day dedicated to celebrating and amplifying the voices of those living with rare diseases and those who advocate for them. To raise awareness, we encouraged our CHI community to answer the question: “What do you dare to dream?” Check out some of their answers highlighted in our #RareAndDareToDream campaign.
The CHI staff celebrated our HI community with a virtual Rare Disease Day gathering via Zoom on February 28. We had attendees from 13 countries join us to share their dreams, triumphs, and challenges of having or caring for someone with HI.
Congenital Hyperinsulinism Family Conference
Thank you to everyone who joined us at our 2023 Spring Congenital Hyperinsulinism Family Conference in Philadelphia, PA, in April! Thank you to our partners, the Children’s Hospital of Philadelphia Hyperinsulinism Center team, for working with us to make the weekend possible. View event photos here.
Over two days, we learned the latest in HI research from our talented HI network of HI parents, patients, specialists, physicians, and advocates. Presentations covered topics like feeding management, diagnosis, clinical research, and more from leading HI experts from around the world. Presentations are available here.
We also had 13 CHIbra Scientific posters on display from members of our HI community. Thank you to everyone who submitted a poster or shared some of their HI-Story over the weekend; your participation plays a key role in raising awareness of congenital hyperinsulinism and how it differs from person to person. Janna Pelle, musician and former CHI Staff Member, taught the children in attendance two of her original songs about HI – “Down and Up” and “Life Without Lows” – and preformed it for everyone at the conference on Saturday.
Thank you to our conference sponsors: Crinetics, Eiger BioPharmaceuticals, Hanmi, Rezolute Bio, Zealand Pharma, and Amidebio. These sponsorships and other generous donors made it possible for the conference to be free of charge for the entire HI community.
Million Dollar Bike Ride
On June 10th, Team CHIbra gathered in Philadelphia for our tenth year of participation in the Million Dollar Bike Ride. We are “wheel”-y grateful to our riders, volunteers, and supporters who have helped us raise over $8,500 so far!
Ride day may have come and gone, but you can continue donating until the last week of June. Remember, the University of Pennsylvania will match the first $30,000 of our donations. Funds raised support the critical need for research for diagnostic tests to increase timely diagnosis of HI, tools for better management, new treatments, and, one day, a cure. Donate today.
Upcoming Events
Congenital Hyperinsulinism Family Meeting Day
We are excited to announce Congenital Hyperinsulinism Family Meeting Day in Brisbane, Australia, on August 5, 2023. Registration is open.
In addition to the meeting day and event dinner on Saturday, August 5, we will have a welcome reception at the meeting hotel in Brisbane in the evening on Friday, August 4. We are planning a family activity in Brisbane for Sunday, August 6.
2023 Fall Congenital Hyperinsulinism Family Conference
Join us in The Hague, Netherlands on September 22 – 24, 2023 for our fall 2023 Congenital Hyperinsulinism Family Conference!
CHI, together with Kongenitaler Hyperinsulinismus e.V. and Netherlands Congenital Hyperinsulinism Support Group, are excited to host a weekend of connection and collaboration with HI community members from around the world.
Registration is open. There are limited hotel scholarships for HI families needing financial support and traveling from out of town to stay at the hotel the nights of September 22 and 23 while attending the conference.
Physicians, researchers, geneticists, patient advocates, HI patients, and more members of our HI communities will present research and stories. Learn more about the speakers, view the draft agenda, and register.
CHI Community Corner
James’ HI-Story
Thank you to Marie-Claire Archbold, an HI mom, for sharing her son James’ HI-Story with us this month.
”Many people who know him would never suspect he has a rare disease and don’t know how closely we are watching what goes on inside,” said Marie-Clare.
Learn more about James and the Archbold/Eckenrode family by reading James’ HI-story.
Submit your or your child’s HI-Story.
Say Hi to CHI: Lora Van Arsdell
In February, the CHI welcomed Lora Van Arsdell as our new Research and Support Specialist.
Some of you may recognize her from CHI’s past events as a HI mom and Collaborative Research Network member, and we are thrilled to have her now on the CHI staff. Learn more about Lora:
Title: Research and Support Specialist
Location: Nolanville, Texas
Start Date: February 2023
Education:
- Bachelor’s degree in German and Psychology
- Master’s degree in Social Work
- Doctorate in Clinical Psychology
What you’re looking forward to as a member of the CHI Staff: I am looking forward to being able to serve our HI community through providing support to our members and helping to find a better understanding of the challenges of this disorder, and the strengths of our members in order to help inform opportunities for improved treatment for individuals with HI and their loved ones … it’s an honor to hear and to share stories, and I hope we will ultimately find a cure for all!
Your favorite part about being in the HI community: How ready, willing, and able we are to support one another in whatever ways we can – I can’t imagine navigating this life without so many of the people I’ve met in through this group!
Hobbies/favorite activities outside of work: Traveling to see my family, playing with my kids, baking, watching movies with my husband and Bravo by myself, and reading for fun (if I get the chance).
Anything else you want our audience to know: I am grateful for what CHI has given to me and look forward to the opportunity to give back in this exciting new role.
Say Hi to CHI: Laura C. Sullivan
CHI is thrilled to welcome Laura C. Sullivan to our Board of Trustees. Laura lives and works in Southern California and is the mother of a precocious 2-year-old who was born with HI. Laura brings a decade of experience working in marketing and patient access in the biotechnology industry focused on oncology.
“I wanted to get involved to give back to the community that has helped my family so much. I also want to raise awareness of the condition and to share knowledge with HI caregivers and families. Finally, I want to be part of the movement to accelerate the development of new treatments for people with HI.” – Laura Sullivan
The role of the board of directors is to provide fiduciary oversight and strategic direction for the organization. Laura’s marketing experience brings a new area of expertise to the CHI Board.
“CHI is excited to have another dedicated HI parent and board member that will advocate for our community.”
– Sheila Bose, President, CHI Board of Trustees
Research
Did you know that over 80 articles about or related to congenital hyperinsulinism were published over the last year? Many members of the CHI staff, Collaborative Research Network, and Centers of Excellence are featured contributors to these published works.
Check out the available articles – many of which are free.
You can contribute to HI research – without leaving your house! Share your experiences with the HI Global Registry (HIGR) so the community can learn from your insights. HIGR is a patient-reported online research study on what it is like to live with hyperinsulinism.
Enroll in HIGR today! Your answers can be updated at any time.
We are so proud of everything that our HI community has accomplished this year and can’t wait for the rest of 2023!
Make sure you’re following us on social media to not miss any updates.
Have any feedback or questions? Email klewis@congenitalhi.org
