Winter 2021 Newsletter
Love Some1 with Glut1 Annual Campaign
It is time for Love Some1 with Glut1 - our annual awareness and fundraising event that launches on Valentine's Day (February 14th) and ends on Rare Disease Day (February 28th). It is an important opportunity for our community to join forces to educate others and raise essential funds to help better meet needs in the Glut1 Deficiency community.
In addition to our regular mission program activities, we are working on some big and important goals for 2021:
It is easy to sign up and be a fundraiser, and each person's contribution - no matter the size - helps us collectively make an enormous impact. We know this past year has not been an easy one for a number of reasons, but our mission continues. If you can, we hope you will join us in helping us reach our ambitious goals for the coming year by signing up to be an individual fundraiser for the campaign or making a donation.
Thank you for your part in supporting the efforts and driving progress as we continue our work to bring help and hope to everyone, everywhere, who is affected by Glut1. Your giving makes all of it possible, and we are sincerely grateful.
In addition to our regular mission program activities, we are working on some big and important goals for 2021:
- capture patient voice through a large-scale community survey
- host our first virtual family conference
- host our first scientific convening for researchers and clinicians to exchange knowledge and spur new ideas
- begin building a collaborative research network to drive progress
- create and begin implementing and funding a strategic research plan
- build and launch a natural history study to better understand life-long patient experiences
It is easy to sign up and be a fundraiser, and each person's contribution - no matter the size - helps us collectively make an enormous impact. We know this past year has not been an easy one for a number of reasons, but our mission continues. If you can, we hope you will join us in helping us reach our ambitious goals for the coming year by signing up to be an individual fundraiser for the campaign or making a donation.
Thank you for your part in supporting the efforts and driving progress as we continue our work to bring help and hope to everyone, everywhere, who is affected by Glut1. Your giving makes all of it possible, and we are sincerely grateful.
watch the heartwarming annual campaign video!
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Annual Report
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We are extra thankful for the support so many of you provided during 2020 - a year full of challenges and change. Please take a few minutes to read our 2020 Annual Report to find out how you've helped make a tangible difference in our mission work. We are excited about the big plans we have for 2021 to drive progress and serve our community, and we'd be honored and grateful to have you join the mission and lend your support.
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2021 Conference Updates
As you've likely heard or guessed by now, we have had to make the disappointing decision to postpone our planned in-person gatherings for this summer until 2022. However, we are happy to be working hard to provide virtual alternatives to bring the community together for unique opportunities to meet, share, and learn.
We have some details on our website about our Family Conference and the Scientific Meeting, and registration for both will be opening soon. Remember that Family Network and Professional Network members will receive special registration discount codes for the meetings, so please consider signing up if you have not already.
The scientific meeting in June is designed to provide a forum for researchers and clinicians to share and collaborate as we lay the groundwork for a patient-led collaborative research network and a strategic research plan, and patient perspectives will be woven into all of these efforts. Lay summaries of the scientific presentations and discussions will be provided for family members at our virtual family conference in July.
Please continue to check our website and watch for email announcements with more details as planning moves along, and save the dates below for our upcoming gatherings.
We have some details on our website about our Family Conference and the Scientific Meeting, and registration for both will be opening soon. Remember that Family Network and Professional Network members will receive special registration discount codes for the meetings, so please consider signing up if you have not already.
The scientific meeting in June is designed to provide a forum for researchers and clinicians to share and collaborate as we lay the groundwork for a patient-led collaborative research network and a strategic research plan, and patient perspectives will be woven into all of these efforts. Lay summaries of the scientific presentations and discussions will be provided for family members at our virtual family conference in July.
Please continue to check our website and watch for email announcements with more details as planning moves along, and save the dates below for our upcoming gatherings.
2021 Virtual Meetings
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2022 Meetings in Person (we hope!)
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We've worked with the hotel we were contracted to use for the 2021 meeting and have been able to reschedule the in-person meeting for 2022, which will be held in our more traditional timeframe of mid-July.
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. You can find some details about the hotel and a short video about tourism in San Diego on our website, and we're already looking forward to gathering together again! |
Partner Organization Conferences
Updated Brochure - English and Spanish versions
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We recently shared our updated and redesigned brochure - A Guide to Understanding Glut1 Deficiency. It's meant to be a resource for families and professionals alike, and it includes some of the newest information and recommendations from the 2020 expert consensus guidelines as well as our adult patient survey.
We are very happy to announce a new Spanish translation version is now available on our website, and we'll soon have print versions available. Please visit the link below to view online or download either brochure. We're very grateful to all who helped support this project. |
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Million Dollar Bike Ride - $64,200 Grant Awarded!
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We are thrilled to share news about the grant award from the 2020 Million Dollar Bike Ride at Penn Medicine's Orphan Disease Center. The G1DF joined efforts with Miles for Millie (the Meisner family) and fielded our first Team Glut1 in the event. Together, with your help, we raised money and qualified for matching funds to secure a $64,200 grant specifically for Glut1 Deficiency research. After the request for proposals period, the MDBR oversaw the grant scoring and selection process. |
Dr. Jason Park at the University of Texas Southwestern Medical Center was chosen to receive the pilot grant for his proposal on Identification of Glut1 Activating Compounds in a Mouse Model. This study will build on prior work funded by the Glut1 Deficiency Foundation to screen more than 10,000 drug compounds to identify Glut1 activation in cells grown in the lab. This screen identified several dozen compounds which have been characterized for other human diseases and have current FDA approval. This new study funded by the MDBR will start the examination of the most promising of these Glut1 activating drugs to establish which of them show the greatest improvement in Glut1 Deficiency in mice. It is expected that this work will ultimately lead to finding one or more drugs ready for further preclinical and human study.
You can find details about all the rare diseases represented and the grants awarded at the MDBR website, and stay tuned for information to come on the 2021 event to be held virtually on June 12th - Team Glut1 will ride again!
You can find details about all the rare diseases represented and the grants awarded at the MDBR website, and stay tuned for information to come on the 2021 event to be held virtually on June 12th - Team Glut1 will ride again!
Metabolic Health Summit Resources
We were delighted to have had the chance to participate in and exhibit at the Metabolic Health Summit meeting for the first time in early 2020, and their team has put together some wonderful resources from the meeting and from the overall research landscape. Find more information and links to these free resources below.
Connecting our Community
Monthly Zoom Meetings
Our monthly Glut1 Gatherings on Zoom give us social time to get to know one another better and offer support and encouragement, and we also have some sessions that are more educational in nature with topics and guest speakers.
We have several different groups meeting on a monthly basis, including groups for children and also teens/adults living with Glut1 Deficiency, one for parents, and one hosted in Spanish. |
New Discourse Forum
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 in order to take part in the closed, protected forums.
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Family News
#GivingTuesday Superstars
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Two Glut1 Superstars were featured by organizations they work with during #GivingTuesday campaigns. Blaire Mosby and her family were spotlighted by the St. Louis Arc, a wonderful community-based organization that advocates for and with people with disabilities and their families.
Sydney Falls was featured by Shining Hope Farms, which is an amazing equine facility in Mt. Holly, North Carolina that serves people with disabilities and integrates physical, occupational, and speech services with hippotherapy. Click on their pictures to see their stories, and look for similar programs in your area! The Arc Directory of Chapters AHA Director of Providers |
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Family YogaDr. Marjorie Caro, mom to Caroline, continues to host regular yoga sessions at her studio in Miami, and she donates proceeds to the Glut1 Deficiency Foundation. Recently, she hosted a special family yoga night for Glut1 families in Spanish. We are grateful for all the awareness Marjorie helps raise and the support she and her family provide to the Glut1 Deficiency Foundation. She has promised to lead yoga sessions for us at our next in-person gathering in San Diego!
She shared some video of this special session, which you can see on Instagram at the link below...and check out those yoga mats and Caroline's yoga pants! |
Facebook & Instagram Fundraisers
We also want to thank all the Facebook and Instagram fundraisers hosted since our Fall newsletter. These events this quarter were held for #GivingTuesday, in honor of birthdays and other special events, and also as memorial tributes. We appreciate all who have organized or donated in this way and helped spread awareness and provided much-needed and impactful support. Total giving since the last newsletter is $18,809.39 - that's amazing, and we are so grateful!
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THANK YOU!
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please let us know if you have items to suggest or submit for future newsletter editions
