CHI Newsletter 
2017 - 2018 Highlights
July 2018
Dear Friends,
 
How time flies. As we enter the second half of 2018, we want to thank you for your commitment to Congenital Hyperinsulinism International (CHI) and to share all we have accomplished together with you in 2017, and the first half of 2018.

Take a look at some of our recent highlights, and learn what’s in store for the rest of the year - here’s to another amazing chapter in the CHI world that will bring us closer to ending preventable damage and death from Congenital Hyperinsulinism (HI), increasing access to lifesaving medications and care, and better treatments and cures for HI!
CHI Conferences and Meetings
 
Family Conferences
 
Since 2006, our family conferences have been bringing together leading global HI specialists with HI families from around the world. CHI has organized 14 conferences and meetings attended by hundreds of families. Participants and speakers have come from 22 countries. Physicians, scientists and other specialists share their latest research and provide families with invaluable information on all aspects of living with HI. Family members have an opportunity to have all their questions and concerns answered by HI experts. The specialists learn about HI from the patient and caregiver experts. The connections families make with each other are an important part of the conference experience. Often, kids meet other kids with HI for the first time! Sugar checks and g-tubes are a dime a dozen. Registration is open to people with HI, their family members and caregivers, and professionals in the medical field.
 
#CHIFAM2017 - Congenital Hyperinsulinism Family Conference at the Stockton Seaview Hotel in New Jersey
 
 

 
 
#CHIFAM2018 - Fort Worth and Athens!
 
This year, there will be two #CHIFAM2018 conferences.  The first is co-sponsored with Cook Children’s and will be held in Fort Worth Texas at the Hilton Garden Inn. The faculty for the conference will include Cook Children’s specialists from their Hyperinsulinism Center, and specialists invited from around the country and world. Biotech companies are coming as well to present on the latest in hyperinsulinism pre-clinical and clinical research.  Familes from as far away as Australia have registered and we have many people attending from close by, as well. Learn more and register here: https://congenitalhi.org/2018-chi-family-conference-in-fort-worth-texas/
 
  
 
Next stop, Athens, Greece! On September 25-26, 2018, CHI in partnership with the Medical School of the National Kapodistrian University of Athens, will hold the 2018 Congenital Hyperinsulinism Family Conference in Athens, Greece. The conference will take place at the Wyndham Grand Athens.  As of now, speakers are coming from nine countries! Learn more and register here: https://congenitalhi.org/chi-family-conference-in-athens-greece/
 

International Meeting of Pediatric Endocrinologists (IMPE)
 
In September 2018, CHI attended the International Meeting of Pediatric Endocrinology in Washington, DC. At our booth we had conversations with over 100 endocrinologists from all over the world. These are some of the take-aways from our conversations:

  • Almost all the endocrinologists have treated babies and children born with congenital hyperinsulinism; 
  • They are passionate about efforts to #StopTheLows and many of them agree with and work for the hypoglycemia guidelines found here to be adopted in their hospitals;
  • In many countries access to lifesaving medications is a very serious problem;
  • The pediatric endocrinologists we met are a truly dedicated group of professionals. #IMPE2017
 
In September, CHI will have a similar booth at the 2018 ESPE meeting in Athens where we look forward to making hundreds of new contacts in the pediatric endocrinology world to raise awareness of congenital hyperinsulinism and hypoglycemia guidelines.
 
 
Research
 
The HI Global Registry 
 
CHI is beyond thrilled to announce it has developed a patient-reported registry called the HI Global Registry with its partners to improve the understanding of HI, and advance research for better treatments and patient care. The registry consists of a series of online surveys that asks the participant questions about the patient’s experience with the disorder over his or her lifetime. The data is stored on a secure cloud-based platform and made anonymous by removing any personal details that can identify the patient. This information is then combined with patient data from around the world to produce research reports that can be studied by disease experts and researchers. The HI Global Registry will be open for registration very soon.
 
Together, we will CONNECT THE DOTS to find better treatments and cures for HI.
Learn more here: https://congenitalhi.org/higlobalregistry and watch our HI Global Registry video: https://www.youtube.com/watch?v=JvlsydOvvrE

 
Raring to Go for CHI in 2018!
 
On May 20, 2018, CHI took part in The Million Dollar Bike Ride (MDBR) for Orphan Disease Research for the fifth consecutive year. Raising funds for pilot projects that will lead to better treatments and cures is a key CHI activity.
 
Every year, CHI has a small but mighty team. Leo Brown has been the Raring to Go for CHI Team Captain for 5 years and has done a fantastic job of getting us to over $400,000 raised for hyperinsulinism research.
 
This year, we had another great team of riders and supporters assembled. Stay tuned for the Request for Applications coming out in September. We thank all who attended the bike ride in Philadelphia, and all who created your remote teams via CrowdRise! And of course, all of those who were #RollingTowardsResearch on social media!
 
 
 
Our CHI Community was “Raring To Go” for Rare Disease Research in 2017!
 
Last year we doubled our team size for the Million Dollar Bike Ride at the University of Pennsylvania, which donates and matches all the funds we raise money raise for better treatments and cures for orphan diseases. In 2017,  we raised over $87,000 for a pilot study. The grant recipient for the 2017 award is Dr. Diva DeLeón-Crutchlow, who is studying the biohormonal bionic pancreas for the treatment of diabetes post-pancreatectomy in children with congenital hyperinsulinism. 
 
 
 
 
 Our 2018 MDBR Team 
 
 
Sugar Soirée 2017
 
 
Our 2017 Sugar Soirée was hosted by Conan O’Brien and held at The Pool and The Grill in New York City.  Chairmen Pamela and Eric Rytter, together with Mario Carbone, Major Food Group, and Conan and Liza O’Brien provided the leadership for a truly spectacular and entertaining event. Over 290 people attended and many more donated in honor of the event. The evening included musical performances by the talented Tenile Arts and Hamilton Loomis and a video produced by Conan’s creative team at CONACO.
 
 
At the Sugar Soiree, we honored Dr. Diva De León-Crutchlow of Children’s Hospital of Philadelphia, with the CHI Be My Sugar Award for Medical Excellence. Dr. De León is a true champion of those living with HI and their families, and her promising research has added very significantly to the understanding of HI.
 

 
We also honored Alexandra Fallon with the CHI Be My Sugar Award for Extraordinary Service. Ms. Fallon’s work has made it possible for CHI to raise hundreds of thousands of dollars to support HI families, fund research, and raise awareness to prevent brain damage and death. Her beautiful designs have lifted the spirits of our community and helped us to share a strong visual message.
 
 
 
Together with you, CHI will continue to support promising research projects leading to better treatments and a cure for hyperinsulinism and hyperinsulinism/hyperammonemia (HI/HA), raise awareness of HI to end preventable brain damage and death, and support and help families access life-saving medications and treatment.
 
Scarsdale, New York’s Fenway Golf Club is the spectacular location of this year’s Sugar Soirée.  CHI is delighted to announce Thaïs and Marc Stuart are chairing the event. Surrounded by 155 acres of rolling hills and breathtaking greenery, Sugar Soirée guests will enjoy an evening of dinner, dancing and live music performed by premium Boston band, Legends of Summer, in the newly renovated mansion – all for the Sweetest Cause.
 
 
Awareness
 
Rare Disease Day
 
This year, the Rare Disease Day hashtag was #ShowYourRare - and our Rare Disease Day campaign was inspired by an actual show. The new TV Series, “The CHI,” taking place in Chicago, inspired us to create “Our CHI” posters as a vehicle for raising awareness about the condition.  With our posters we showed that “Our CHI” takes place all over the world. Our posters feature babies, children, and adults living with hyperinsulinism. HI Families got creative with this awareness campaign and sent us their photos and entire premises for “Our CHI” episodes!
 
 
 
 
 
New Jersey Rare Disease Alliance - March 5, 2018 Rare Disease Day Event  
 
The New Jersey Rare Disease Alliance hosted an awareness event for Rare Disease Day 2018 with a record 130 rare disease advocates in attendance, inlcuding several HI experts. Julie Raskin, CHI Executive Director, was an organizer of the event and moderated the clinical development panel featuring pediatric endocrinologist and HI specialist Katherine Lord from Children’s Hospital of Philadelphia (CHOP), and Suzanne Fitch of Zealand Pharma.
 
We gathered to network, learn from advocacy and clinical development panels, and meet with legislators. Keynote speaker U.S. Congressman Leonard Lance discussed the need for quality affordable health care for people with rare diseases and New Jersey Assemblyman Daniel Benson shared his support for the NJ Cap The Copay bill which would limit how much families pay at the pharmacy for prescriptions.
 
 
Follow NJRDA on social media!
Facebook: https://www.facebook.com/NJRareDiseaseAlliance/
Twitter: @NJRareDiseases https://twitter.com/NJRareDiseases
 
 
 
We reached over 3000 ‘likes’ on Facebook! 

LIKES = AWARENESS 
So please, invite your friends and loved ones to ‘like’ our Congenital Hyperinsulinism International Facebook page! https://www.facebook.com/congenitalhi/ Help us get to 5,000!
 
Last but not least, Twitter and Instagram! We've reached over 1,000 followers on both! 

And if you're not one of them yet, you should be! Here's all you need to know:
 
Twitter: @congenitalhi https://twitter.com/congenitalhi
Instagram: @chi_hypoglycemia https://www.instagram.com/chi_hypoglycemia/
 
 
#StopTheLows
Posters Worldwide
 
Our posters are now available in 14 different languages. They can be shared with doctors, hospitals, schools, daycares, and anyone or any institution to educate folks on “What Is Hyperinsulinism?” and “Signs and Symptoms of Hypoglycemia” Take a look here and contact the CHI office if you would like to help distribute them: https://congenitalhi.org/chi-posters/

*If you want to add a translation for a language you don’t see, email jpelle@congenitalhi.org for our translation template!

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#sayhitoHI Infographics

We would like to thank everyone who participated in our #sayhitoHI Instagram takeover - Thank you for sharing such a personal part of your lives in order to raise awareness of hyperinsulinism! We also created infographics that define in simple terms hyperinsulinism and hypoglycemia.

https://www.youtube.com/watch?v=wWsPaUDcHpU&t=4s
 
All of this work is possible thanks to CHI donors, sponsors, and volunteers.  You make rare common and the CHI world revolve!
 
 

 
Supporting Patients
 
Providing HI support around the world

One of the most confounding issues within our HI community is not everyone gets life-saving medication or access to treatment. CHI fights everyday to change that. We partner with aid organizations and pharmaceutical companies to donate and deliver medication to those who need it and are unable to access it on their own.
 
Thanks to these partnerships, children are able to live with their families rather than at hospitals. A big shout out to Direct Relief, Teva Pharmaceuticals, Ipsen Biopharmaceuticals, Clincierge, and WEP Clinical for working with us to make life outside of hospital walls possible for many children around the world. We hope to be able to increase this support in future years.

In addition to providing medication to some, we work with the leading centers around the world to help patients gain access to their expertise. We have benevolence funds established at some of these institutions to help patients and families with travel costs and the expenses associated with living in a hospital, while their children are getting treatment.
Our Congenital Hyperinsulinism Family Support Forum REACHED over 1,000 Members!
We now have 1,129 members in our support group and are grateful for our extended CHI Family - thank you for supporting each other and sharing your stories with one another! Alone we are rare, together we are strong! Request to join here if you haven't already: https://www.facebook.com/groups/hyperinsulinismsupport/
Scientific Advisors
 
Remove my name from all future mass email communications.
 
Address postal inquiries to:
Congenital Hyperinsulinism International
P.O. Box 135
Glen Ridge, NJ 07028-0135

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