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| Dear Friends,
As 2021 draws to a close, we thank you for being part of the CHI community. Thank you for all you do to support the work of CHI, advancing research for better treatments and cures, raising awareness of congenital hyperinsulinism (HI) to prevent brain damage and death, and being there for HI families every step of the way. Your support helped us have a remarkable year in 2021. Despite the continuing pandemic, there are many reasons for hope and optimism. This has been one of the busiest and most productive years on record for CHI. Let’s look back!
We hope you enjoy our year in review!
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We started the year off by continuing our work as members of the Rare As One Project, funded and organized by the Chan Zuckerberg Initiative (CZI). Today, there is an explosion of knowledge and ways to share and collaborate. The Rare as One Network provides resources and structure to maximize the fantastic opportunities brought to us by science, technology, and brilliant, passionate minds. We have continued to learn and grow through the resources that have been shared with us, from mentor-ships, workshops in communications, fundraising, governance, and finance, and one-on-one consultations with experts. We continue to realize how fortunate we are to be a part of this growing network and to have such a fantastic community of supporters, CHI families, HI researchers and clinicians, and our Board of Directors that led us to this moment. | ||||||||
| RARE DISEASE DAY | |||||||||
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| CHI COLLABORATIVE RESEARCH NETWORK | |||||||||
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In 2020, CHI received a Rare As One Network Grant to establish the CHI Collaborative Research Network (CRN). The CHI CRN puts HI patients at the center of a strategy that leads to faster and more accurate diagnosis, drives new evidence-based treatments and cures, standardizes clinical guidelines, and facilitates increased and improved access. To accomplish CRN goals, CHI created 7 different workstreams comprised of HI experts and patient/caregiver leaders to develop a collaborative research agenda. The CRN hypothesis is that if all HI scientists and doctors work together, better care and treatments, and more cures for HI will become a reality sooner.
In April, the first quarterly workstream meetings took place via Zoom and included the 58 CRN council members located worldwide, including Asia, Europe, North and South America, and Australia. You can learn more about the CHI CRN and join the CRN mailing list to be kept up to date for all the developments here.
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| CHI STAFF GROWS | |||||||||
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In Spring 2021, CHI welcomed two new staff members: Mahi Mesfin, Research and Policy Associate, and Katherine Lewis, Communications and Engagement Associate. Our larger staff allows us to continue to provide a world of information, HI research, resources, support, advocacy, and more to improve the lives of children and adults living with HI. |
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| CHI VIRTUAL FAMILY CONFERENCE | |||||||||
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CHI hosted our second Virtual Congenital Hyperinsulinism Family Conference, Living with HI: Yesterday, Today and Tomorrow on June 5, 2021. 203 people from 35 countries participated in the conference, including 22 speakers. The conference included live panels and presentations from leading experts in the field of HI and an exhibit space with the latest information from our sponsors and partners. Participants learned all about HI through presentations from specialists, panel discussions, small group interactive sessions, and the sharing of family stories. This conference offered unparalleled access to knowledge in the field of HI.
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| MILLION DOLLAR BIKE RIDE | |||||||||
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| Team CHIbra participated in the Virtual Million Dollar Bike Ride for the 8th year! Thanks to our team and matching funds from the University of Pennsylvania, a competitive grant for hyperinsulinism research will be offered again this year. We are so grateful for every Team CHIbra member who created a fundraising page and every donation.
Thank you to our 2021 Team CHIbra fundraisers:
We also announced the 2020 MDBR Pilot Research Grant is funding the project known as MAXHIGR which is mapping information between patient-populated HIGR and clinician-derived information for congruence between “user-perceived” and “objective clinical information.” The secondary aims are to 1) validate the Parent Quality of Life (QoL) questionnaires in HIGR and 2) build a prototype model for an integrated database, combining fields from patient-populated and clinician-provided information. Dr. Indi Banerjee of the University of Manchester and the Royal Manchester Children’s Hospital in the UK, along with his research team from leading HI institutions around the world, will add clinician-provided information to HIGR. |
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| CENTERS OF EXCELLENCE PROGRAM | |||||||||
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| THE HI GLOBAL REGISTRY | |||||||||
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| VIRTUAL RESEARCH CONFERENCE | |||||||||
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On September 18, 2021, CHI hosted the 2021 Congenital Hyperinsulinism Virtual Research Conference Collaborating for a Future without Lows.The conference was open to the entire HI community, and 273 people from 39 countries attended. The conference was based on the seven workstreams of the CHI Collaborative Research Network and featured updates on the work that has been done during the CRN quarterly meetings that have been held this year. Presentations highlighted the latest HI research being done around the world.
Click here to view the Conference Agenda, which reviews the topics, speakers, interactive sessions and general information that took place at this year’s conference.
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| SUGAR SOIRÉE | |||||||||
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The 2021 Sugar Soirée, which took place virtually on the evening of November 13, was a wonderful celebration of the HI Community. It was a spectacular event bringing together many of CHI’s most beloved supporters from around the world. Turaya Bryant Kamau, CBS Broadcast Producer, HI Mom, and CHI Board Member, was our fabulous host for the evening.
We were thrilled that we could honor the following HI community members and institutions during the Soirée:
We are so grateful to our host Turaya Bryant-Kamau who lent her professional expertise to planning the program and creating the videos shared during the Soirée, our benefit committee, and our junior committee, who all went above and beyond to support our event once again this year.
Please click here to read more about the 2021 Sugar Soirée. |
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| SUGAR SALON ISRAEL | |||||||||
| On November 22, 2021, CHI hosted the first Virtual Sugar Salon Growing Up with HI in Israel for members of the HI community in Israel. This event featured presentations on topics like living with HI as an adult, managing hyperinsulinism, dietary treatment of hyperinsulinism, physician perspectives, and the RIZE trial. One of the most groundbreaking aspects of this event was the added live simultaneous interpretation into Hebrew and English onto the Zoom platform. It was extremely successful, and we plan to add simultaneous interpretation to events going forward, when we can, so that people who understand languages other than English can participate. Thank you to Rezolute for sponsoring this event. |
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| ACCESS | |||||||||
| CHI continues our work to help HI patients around the globe gain access to treatment and medicine for HI. We partner with WEP Clinical, Direct Relief and IPSEN in these efforts to allow everyone living with HI access to the best possible treatment and care. Earlier this year, Julie Raskin, Executive Director, and Tai Pasquini, Research and Policy Director, met with WEP clinical staff member Samantha Peedin to discuss our partnership and CHI’s mission and goals for the future. |
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Families with HI need ongoing support. The CHI Family Forum on Facebook allows families from all over the world to connect 24/7. Every day this forum is buzzing with support and information sharing. There are 1,904 members from all over the world.
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| EXETER GENETIC TESTING PROGRAM | |||||||||
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| We continued our support for the genetic testing partnership with the University of Exeter in the UK. Those suspected of HI from anywhere in the world, who otherwise would not be able to afford it, received genetic testing for HI to determine the type of treatment each baby or child with HI needs. Joining forces with Exeter has enabled 584 individuals from 55 countries on five continents to access genetic testing. Getting the proper diagnosis and treatment can help avoid brain damage and other severe complications from HI. |
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| CLINICAL TRIAL SUPPORT | |||||||||
| One of the most exciting and promising aspects of CHI’s work, is our collaboration with scientists at biotechs developing potential new treatments for HI. Throughout the year, CHI assists these scientists in understanding the patient and caregiver experience so that they can develop the best possible medical treatments for HI. We have had the opportunity this year to work with Crinetics, Eiger BioPharmaceuticals, Hanmi, Rezolute and Zealand Pharma. It is the patient and caregiver’s generosity — their sharing of their experiences of living with HI — that makes this work possible. These activities occur throughout the year. | |||||||||
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| WHAT IS HYPERINSULINISM POSTER SETS | |||||||||
| CHI posters, “What is Hyperinsulinism” and the “Signs and Symptoms of Hypoglycemia” are now available in 23 languages – the most recent additions are Danish and Dutch! The posters are a fantastic way to raise awareness of HI worldwide. We’re always looking to expand the collection, so please drop us a line if you know someone with the expertise to translate the posters into more languages. See all languages here. |
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Thank you to the CHI Board of Directors for their continuous dedication to the CHI cause and hard work this year.
We cherish each and every member of our community: HI families and our sweetest volunteers and most generous donors. Wishing you all very happy holidays and a wonderful new year. We’re gearing up and ready for an exciting 2022! |
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