Summer 2021 Newsletter
First International Glut1 Awareness Day
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We have big news to share! After a voting process involving Glut1 Deficiency patient advocacy organizations across the globe, together we have established July 10th as International Glut1 Awareness Day! This is a great year to launch this special day, since 2021 is the 30 year anniversary of the first paper published about Glut1 Deficiency.
We know a lot of progress has been made in that time, but there is still much work to do to raise awareness among medical professionals so all the patients out there yet to be found can get their life-changing diagnosis, too. We also need research for better understanding, better treatments, and a better quality of life for our patients and families.
Please join us in celebrating this special day on July 10th. We've been sharing some facts and more details leading up to the day on social media, and we'd love to hear how you plan to celebrate it, too, and help raise awareness and drive progress. We want to start planning early next year, too, to have an assortment of suggestions and ideas on how to come together to raise awareness and celebrate our patient community.
Feel free to use the logo and ribbon above (color, design, wording all decided by a voting process), and you can find some Facebook frames by searching for "Glut1 Awareness".
#glut1deficiencyday
#togetherforglut1
We know a lot of progress has been made in that time, but there is still much work to do to raise awareness among medical professionals so all the patients out there yet to be found can get their life-changing diagnosis, too. We also need research for better understanding, better treatments, and a better quality of life for our patients and families.
Please join us in celebrating this special day on July 10th. We've been sharing some facts and more details leading up to the day on social media, and we'd love to hear how you plan to celebrate it, too, and help raise awareness and drive progress. We want to start planning early next year, too, to have an assortment of suggestions and ideas on how to come together to raise awareness and celebrate our patient community.
Feel free to use the logo and ribbon above (color, design, wording all decided by a voting process), and you can find some Facebook frames by searching for "Glut1 Awareness".
#glut1deficiencyday
#togetherforglut1
Virtual Family Conference
The 2021 virtual edition of our family conference is coming up in two weeks. We have put together a wide range of speakers and subjects, with many of the topics identified through our Glut1 Deficiency Collective Voices Project. You can see the full agenda on our website along with registration links. We have structured the meeting to try to make it as easy and accommodating as possible, with multiple time zones and Zoom fatigue in mind! Each of the three days will feature expert sessions, small group breakouts (many led by Glut1 Deficiency parents), and some fun social activities to end each day. There will be Spanish translations available for the expert and breakout sessions.
We suggest registering as soon as possible so you'll receive the special email announcements going out ahead of the conference to the list of registered attendees. We hope to see you there, too!
We suggest registering as soon as possible so you'll receive the special email announcements going out ahead of the conference to the list of registered attendees. We hope to see you there, too!
Community Voices
We've had 255 families take part in the Glut1 Deficiency Collective Voices Project. While it officially closed on June 1st (with 230 responses then), and we've already been creating some snapshots to share from the data, we would still love to have your participation before we begin the deeper analysis of the things patients and families have shared through the survey.
We presented some of the insights at the Glut1 Deficiency Scientific Meeting in June, and it helps so much to have a clearer picture of what life is like for the patients and families who live with this disease, what their needs and priorities are, and where the gaps continue to exist so we can try to fill them with information, services, better patient care, and more research. Initial findings from the project will be shared at the upcoming Family Conference as well. We are grateful to all who have participated so far, and we encourage you to follow the link below to find out more if you haven't done it yet to make sure your voice is included in this important project.
We presented some of the insights at the Glut1 Deficiency Scientific Meeting in June, and it helps so much to have a clearer picture of what life is like for the patients and families who live with this disease, what their needs and priorities are, and where the gaps continue to exist so we can try to fill them with information, services, better patient care, and more research. Initial findings from the project will be shared at the upcoming Family Conference as well. We are grateful to all who have participated so far, and we encourage you to follow the link below to find out more if you haven't done it yet to make sure your voice is included in this important project.
Science and Research Progress
We were thrilled to host our first ever scientific convening for Glut1 Deficiency in June. The meeting surpassed our goals and expectations, and many new faces and ideas were brought to the table to talk about research to lead to better understanding and better treatments. We look forward to continuing to build on these discussions as we work to create a collaborative research network and a strategic research plan to help us drive progress faster and farther - led by the voice of our patients. Our Science Advisor, Dr. Matthew Gentry, was instrumental in the success of this meeting and continues to help us in multiple ways, and we are so grateful to the presenters, chairs, moderators, and participants who made this big milestone a reality.
Dr. Sandra Ojeda, the new Science Director for the Glut1 Deficiency Foundation, will be presenting a family-friendly summary of the scientific meeting at our virtual family conference, and she'll be leading many of the science and research activities going forward. Sandra stepped off the Board of Directors to take this new staff position - the same title she had before, but a much more engaged and active role in driving our science and research agenda. As a fellow Glut1 Deficiency parent, Sandra is deeply motivated to push progress, and her leadership will be invaluable.
Dr. Sandra Ojeda, the new Science Director for the Glut1 Deficiency Foundation, will be presenting a family-friendly summary of the scientific meeting at our virtual family conference, and she'll be leading many of the science and research activities going forward. Sandra stepped off the Board of Directors to take this new staff position - the same title she had before, but a much more engaged and active role in driving our science and research agenda. As a fellow Glut1 Deficiency parent, Sandra is deeply motivated to push progress, and her leadership will be invaluable.
Save the Date
We'll be hosting our next in-person gathering next year! It will still be held at the Kona Kai Resort on Shelter Island in beautiful San Diego. It should be a great time to visit the city with nice weather and the pleasant temperatures from our location right on the bay. We look forward to planning a unique opportunity to welcome both scientists and families with special programming for each and a fun social event for everyone overlapping in the middle.
You can find some details about the hotel and a short video about tourism in San Diego on our website. We'll be turning our attention to more detailed planning for 2022 soon, so stay tuned to our website and email announcements as things move along. We anticipate registration and hotel reservations to open in the fall with an agenda outline available then, too.
You can find some details about the hotel and a short video about tourism in San Diego on our website. We'll be turning our attention to more detailed planning for 2022 soon, so stay tuned to our website and email announcements as things move along. We anticipate registration and hotel reservations to open in the fall with an agenda outline available then, too.
Million Dollar Bike Ride Research Grant
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The Million Dollar Bike Ride is a very special opportunity to raise funds for Glut1 Deficiency research and have our donations doubled through a program with Penn Medicine's Orphan Disease Center.
This year, thanks to generous donors and support from Team Glut1, the Glut1 Deficiency Foundation, Miles for Millie, and Mission for Macie, we were able to contribute $30,000 to be eligible for a match through the Orphan Disease Center - resulting in a grant of at least $60,000 for a research project specific to Glut1 Deficiency. We are looking forward to the announcements about the grant and details about the application and awarding process, and we can't wait to share the news with our community! Thanks to all who put their hope in motion and helped make this effort such a success! We also hope for a return to the in-person MDBR next year with Team Glut1. |
Glut1 Gatherings on Zoom - New Schedule
Our regular Glut1 Gatherings on Zoom give us social time to get to know one another better and offer support and encouragement, and we've also had some sessions that are more educational in nature with topics and guest speakers.
With life slowly returning to something closer to normal since the pandemic and schedules getting busier, we have made the decision to move the parent and Hispanic community group meetings from monthly to quarterly. We plan to increase the meeting time slightly (75 minutes or so total) and include research updates, special topic presentations, and some social time at each event (almost like a mini-virtual conference!). We plan to resume the Zoom meetings on this new quarterly schedule in September. Dr. Jörg Klepper will be our first guest with this new format, and we will be sharing more details as we get closer.
The Overcomers (adult group) and Glut1 Pals (children) will resume their regular meetings soon, too, after our virtual family conference. Stay tuned for more details on all of the meetings.
With life slowly returning to something closer to normal since the pandemic and schedules getting busier, we have made the decision to move the parent and Hispanic community group meetings from monthly to quarterly. We plan to increase the meeting time slightly (75 minutes or so total) and include research updates, special topic presentations, and some social time at each event (almost like a mini-virtual conference!). We plan to resume the Zoom meetings on this new quarterly schedule in September. Dr. Jörg Klepper will be our first guest with this new format, and we will be sharing more details as we get closer.
The Overcomers (adult group) and Glut1 Pals (children) will resume their regular meetings soon, too, after our virtual family conference. Stay tuned for more details on all of the meetings.
New Resource
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Glut1 Deficiency parents Tom and Maria Rebbecchi hosted a great educational session during one of our monthly Glut1 Gatherings on Zoom this spring. It was a popular topic - how to prepare for emergency medical situations.
Tom and Maria have been so kind as to prepare a power point slide deck to share some of the tips and strategies they covered in the Glut1 Gathering. You can find that resource here, and we thank them again for all they do for the Glut1 Deficiency community - Tom serves on our Scientific Advisory Board and Maria is the Education Director and Board of Directors member. |
Glut1 Community Connect on Discourse
We have launched a new online forum for patients and families on the Discourse platform, which provides unique and secure ways to communicate and to categorize, track, and search topics and conversations that are important to the community. It is our hope that this new tool will help provide support, answer questions, share ideas, and drive research progress. We plan to launch a version for professionals later this year where they can share research findings and ideas and consult with one another on patient care. Make sure you have signed up for the Family Network or Professional Network (launching soon) in order to take part in the closed, protected forums.
Glut1 Community Yoga
Marjorie Caro and Vivian Mathis have started a wonderful new, healthy, and fun way to gather the Glut1 community. They are hosting a weekly yoga session on Zoom (Sundays at 11:00 AM Eastern), and they plan a special session this Saturday, July 10th, in honor of International Glut1 Awareness Day (10:30 AM Eastern). Please find the information below - and Vivian and Marjorie say no experience is needed, just 30 minutes, a blanket or mat, and Zoom!
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Facebook & Instagram Fundraisers
We want to thank all the Facebook and Instagram fundraisers hosted since our Spring newsletter. We appreciate all who have organized or donated in this way and helped spread awareness and provided much-needed and impactful support. FB and IG don't provide a way to contact donors directly to thank them, so we want to acknowledge them publicly here and express our sincere gratitude. Total giving since the last newsletter is $1,185.43 - we are so thankful!
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THANK YOU!
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Sweet Sixteen
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Caroline Melendez and her family had a big celebration for her 16th birthday in June - inviting other Glut1 families from the Miami area to join them. Instead of presents, Caroline asked for donations to the Glut1 Deficiency Foundation, and the family shared information about Glut1 Deficiency, passed out brochures and bracelets, and raised a lot of awareness as well as the nearly $6,000 in donations to the G1DF. We are so thankful to all involved, and for the many ways Caroline's family supports the mission of the Glut1 Deficiency Foundation and helps the community. |
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