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Gordon Knischewsky

Supporting: Love Some1 with Glut1 2022 for Glut1 Deficiency Foundation

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This is the time of year we speak up a little bit louder about Glut1 Deficiency and the amazing foundation that supports our community. The earlier an infant or child can be diagnosed, the sooner treatment can begin to support their health, growth and development. We are so grateful that we wound up referred to a neurologist familiar with Glut1 when we were searching for answers for Gordon early on. The more everyday folks and medical professionals are made aware and educated about what Glut1 is and how it can present, the more little ones who will receive that critical early diagnosis. 


The more advocacy for patients and families like ours, the more meaningful and effective support we receive and can give to others in return.


The past year has been tough for Gordon as we try to balance supporting his energy levels, neurological health and development through ketogenic treatment with endeavouring to minimize side effects that have developed that are a detriment to his kidney health and daily quality of life. The hope of an alternative treatment or someday a cure for Gordon and all his Glut1 family is more than enough reason for us to champion investment in the tireless work that the Glut1 Deficiency Foundation does to support and fund research. 


We love Some1 with Glut1 who shines

bright as the sun and fills our every day with joy and inspiration!




 

Each year, from Valentine's Day to Rare Disease Day, the Glut1 Deficiency Foundation hosts the Love Some1 with Glut1 campaignIt is an important opportunity to increase awareness and educate others about this rare disease while raising essential funds to help better serve the needs of our patient community through our mission programs.


In addition to our regular activities, we are working on some big and important goals for 2022

  • host our 9th family conference to bring families together to meet, share, and learn 
  • host our 2nd scientific convening for researchers and clinicians to exchange knowledge and ideas 
  • launch our Research Roundtable program to build a collaborative research network 
  • begin implementing and funding our newly developed patient-led Research Compass
  • launch a natural history study to better understand life-long patient experiences
  • expand our educational exhibits to reach and teach new audiences of medical professionals
  • create a new website to serve as a hub for information, support, connection, and hope


All of this year's campaign donations will be used to drive research progress and provide funding for projects in our new Research Compass.

Thank you for your part in helping us reach our goals and supporting our mission as we continue our work to bring help and hope to everyone, everywhere, who is affected by Glut1. 


Shine Like Some1 with Glut1






learn more about Glut1 Deficiency

from our brochure here














How would you like to support?

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