Fall 2020 Newsletter
Scientific and Family Conference
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It is with much disappointment that we announce the postponing of our in-person conferences scheduled for
summer 2021 due to the ongoing concerns and complications around the COVID-19 pandemic. Our plans now are to move the in-person gatherings to summer 2022 in the same location (San Diego) at the same venue (Kona Kai Resort), and we will host virtual meetings for both our Scientific and Family conferences in 2021. The virtual Scientific Conference will be held June 21-22, 2021 with the agenda currently being finalized. The Family meeting date has not yet been set, but we anticipate it to be mid to late July. Please stay tuned for more details, and don't forget that those who join our Family Network and Professional Network will be eligible for special discounts when registration opens. |
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Stay well everyone!
New Educational Brochure
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We are excited to share our updated and redesigned brochure - A Guide to Understanding Glut1 Deficiency! It is 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. The brochures are an important part of our mission components to increase awareness and improve education. We distribute them at our educational exhibits at professional medical conferences, provide them to clinicians to give out to patients in their care, and send them in our Family Network welcome packets. There is a downloadable version on our website, and you can also view the entire brochure online as well. We are also happy to provide printed copies to those who request them through our website. We are so thankful to all who played a part in making this important project come to life! |
New ICD-10-CM Diagnosis Code for Glut1 Deficiency
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Don't forget about the new ICD-10 code for Glucose Transporter Protein Type 1 Deficiency Syndrome that went into effect on October 1st. This is a major milestone for our community, and we are thrilled with the stories we've been hearing from families who are excitedly sharing the new code with their medical team and support service providers. |
We've also talked with a few doctors who have shared that the new code greatly simplifies charting the medical records and requesting services or reimbursements. We also know it will help provide an important way to track patient experiences across a number of channels, which will have a significant impact on research capabilities. Please find more information about this new code on our website and learn how you can help spread the news and encourage its use.
Expert Consensus Guidelines Published
We are so excited and grateful to have this important new resource to help better inform diagnosis and treatment for our patient community. It was an enormous task for those involved to put together these international consensus guidelines, but we know the benefits to come from the effort will be many. The full text paper is available free through open access arrangements.
NIH/NINDS Scientific Workshop
We were honored to have the opportunity to participate in the scientific workshop for Metabolism-Based Therapies for Epilepsy. The meeting was organized by Dr. Juan Pascual and Dr. Mackenzie Cervenka, both members of our Medical Advisory Board, and also Dr. Adam Hartman at the NIH. G1DF Executive Director Glenna Steele provided personal experiences and also perspectives on the role of patients and patient advocacy organizations in research.
It is a great progressive step to have this type of focus on ketogenic diets from the NIH, and to have Glut1 Deficiency spotlighted in the process was an extra bonus. We hope many good things will result from this effort, and we are so grateful to all involved.
You can find the pre-meeting presentation videos at the NINDS website, and recordings of the live panel discussions and Q&A will be available soon along with the written summary.
It is a great progressive step to have this type of focus on ketogenic diets from the NIH, and to have Glut1 Deficiency spotlighted in the process was an extra bonus. We hope many good things will result from this effort, and we are so grateful to all involved.
You can find the pre-meeting presentation videos at the NINDS website, and recordings of the live panel discussions and Q&A will be available soon along with the written summary.
Survey Opportunity
The Nutritional Neuroscience Lab at American University is conducting a survey investigating caregiver perspectives on dietary therapy for epilepsy. The survey is open to children who are currently using or who have previously tried a dietary therapy.
Virtual Events
Matthew's Friends and the International Neurological Ketogenic Society are presenting a monthly webinar series leading up to the 7th Global Symposium for Ketogenic Dietary Therapies in October 2021. The webinar series kicked off this month, and you can find more information at Matthew's Friends website.
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On December 20th, the Italian Glut1 Association will host an online event with Dr. Pierangelo Veggiotti and Dr. Valentina De Giorgis, who will discuss in lay terms the new International Consensus Guidelines for Glut1DS. They will answer questions from families. The link to the event will be published on their facebook page, so check in for more details as the date gets closer.
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Film Screening
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Our fellow Rare Epilepsy Network members, the Dup15q Alliance, has purchased the streaming license for the documentary "Intelligent Lives". It is a project from award-winning filmmaker Dan Habib, which has been a catalyst to transform the label of intellectual disability from a life sentence of isolation into a life of possibility for the most systematically segregated people in America. You can view the trailer online, and find more information and the registration link at the Dup15q Alliance website.
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It will stream on 11/28/20 at 8:00 PM Eastern Time, and they have invited all of the rare epilepsy communities to join.
Connecting Our Community
Monthly Zoom Meetings
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We have developed a Zoom program to provide opportunities for members of our community to meet up with others no matter where we live! These virtual gatherings 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. Make sure you're signed up for our Family Network to get notices, details, and registration links for the meetings. The Thankful Tree pictured was a recent project of the Glut1 Pals Zoom group, led by Maria Rebbecchi and Erin Meisner. |
New Discourse Platform
The Glut1 Deficiency Foundation is building a new online forum to provide opportunities for the community to meet, share, and learn. It is being built 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. There will be separate channels for patients/families and clinicians/researchers, and it is our hope that this new tool will help provide support, answer questions, share ideas, and drive research progress. We look forward to launching soon and hope you will join us online on this new adventure! Please stay tuned for additional details, and make sure you have signed up for the Family Network or Professional Network in order to take part in the closed, protected forums.
GivingTuesday and End of Year Gifts
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The Glut1 Deficiency Foundation will be participating in the GivingTuesday campaign on Tuesday, December 1st. This is an annual global day of giving created to encourage support for charities during the holiday season. It is traditionally the first Tuesday after Thanksgiving. GivingTuesday will be extra meaningful this year due to the financial challenges many charities are facing in the wake of the pandemic.
The G1DF has a special online donation page set up for GivingTuesday, but we will also have a fundraiser set up for the day on our Facebook page. Facebook will be matching up to $7 million on a first come basis starting at 8:00 AM EST for all donations to qualifying nonprofits made on GivingTuesday. You may also choose to start your own Facebook fundraiser for the Glut1 Deficiency Foundation on GivingTuesday and the donations will also be eligible for the matches on that day. We greatly appreciate the support we receive no matter when or where, but the GivingTuesday campaign and end of the year gifts have helped provide a great boost to our mission programs in the past. Our work would not be possible without the support we receive from the community we serve. |
Please join us as we celebrate the global day of giving.
Your gift helps the Glut1 Deficiency Foundation give back to the Glut1 Deficiency community. 
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Love Some1 with Glut1 campaign video submissions - please help!
As we think ahead to 2021, we want to request your help with our annual Love Some1 with Glut1 campaign, which runs Valentine's Day to Rare Disease Day each year. It is our signature and main fundraising initiative, and it also plays an important role in our mission to increase awareness and educate others. We hope you'll sign up to take part, and we will share more details in January about why and how to do that.
We wanted to go ahead, though, and ask for submissions for our traditional campaign video. This year's theme is "I'm more than Some1 with Glut1", and we are asking for short video submissions from those living with Glut1 Deficiency. The idea is to share that having Glut1 Deficiency doesn't define you.
SOME DETAILS:
We wanted to go ahead, though, and ask for submissions for our traditional campaign video. This year's theme is "I'm more than Some1 with Glut1", and we are asking for short video submissions from those living with Glut1 Deficiency. The idea is to share that having Glut1 Deficiency doesn't define you.
SOME DETAILS:
- The script is below, and we invite and encourage you to share this message in your video any way you like - verbally, sign language, assistive technology, signs, props, costumes, music, whatever inspires you!
- Video length is suggested to be up to 20 seconds or so. Don't forget to leave a little cushion of time before and after for transitions.
- Please film in landscape mode (horizontal picture).
- Email your submissions to Glenna at gsteele@G1DFoundation.org by January 15th.
- THANK YOU for your help!
Family Fundraisers
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The Glut1 Deficiency Foundation is honored to have been included in several memorials over the last few months where families have suggested donations to the G1DF in lieu of flowers when they have lost loved ones. It is especially humbling and meaningful for our community to be remembered by these families during their difficult times of grief, and we are sincerely grateful for the lasting impact these tributes have for our patients.
In Memory: Gertrude Rapaport Danny Davis Alice Bettencourt Andrew Hollas Thomas McCann Jerry Hake |
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Zoe Glick is a super Glut1 sibling and arranged a special event to honor her little brother, Alex, and to raise money for the Glut1 Deficiency Foundation. Zoe has starred in a number of Broadway productions, and she gathered her friends from theater to perform in a virtual Holiday Cabaret that premiered Sunday evening, November 22nd. You can watch the video and read more about Alex's story at a special fundraising page set up for the event. Thanks to all who participated in this fun and entertaining virtual concert!
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The Breen Family celebrated Tessa's 20th birthday in a unique and creative way this year due to the pandemic, and we were honored to be included. $20 donation gifts were requested to the Glut1 Deficiency Foundation to honor Tessa's 20th in 2020! The Breens then held a drawing to give special prizes to some of the donors. Thank you Tessa and family! |
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The York Family celebrated daughter Abby's birthday and diagnosis day virtually this year, requesting donations for the Glut1 Deficiency Foundation and raising awareness and helping educate others along the way. You can read more about Abby's progress and accomplishments since getting her diagnosis on their campaign page. Thanks Yorks! |
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We are most grateful to have been awarded our second grant from the Church & Dwight Employee Giving Fund. Our application was again sponsored by employee Michele Janesko, a special friend of the Palmer family and their daughter, Morgan. This year's grant of $2,000 will help support our welcome packet program, and last year's in the same amount helped make our new brochure possible. |
Facebook Fundraisers
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We also want to thank all the Facebook fundraisers hosted since our Summer newsletter. These events were held in honor of birthdays and other special events. We appreciate all who have organized or donated to one of these events and helped spread awareness and provided much-needed and impactful support. Total giving since our summer newsletter was $1,567.71.
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Shop to Support
We also want to keep reminding everyone about other free and easy ways to help the G1DF when you shop online. We are a participating charity for AmazonSmile and Giving Assistant. Please visit our website to find out more about using these great programs, which have generated several thousand dollars for the G1DF thanks to our supporters who have signed up to use them. The holiday shopping season offers a wonderful opportunity to make extra use of these programs - thank you!
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Online Store
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Please visit our online store to find a selection of Love Some1 with Glut1 merchandise in stock and ready to order. You'll also find links to special custom jewelry from Julie Fjell.
We have restructured our pricing so there will be no shipping costs to addresses in the United States. If you are outside the US, please contact us for shipping quotes prior to ordering. Those who join the Family and Professional Networks will receive special discount codes for our online shop! December 15th is the deadline to order to make sure delivery comes in time for Christmas. |
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