Hope For Hypothalamic Hamartomas - September 2021
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International HH Awareness Month - Choose HOPE |
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Hope For Hypothalamic Hamartomas is excited to kick off International Hypothalamic Hamartoma (HH) Awareness Month #HHAwareness with September 15th being recognized internationally as HH Awareness Day.
We ask that you, our HH community, embrace this international awareness initiative throughout the month of September.
Working together we'll ensure those with HH continue to have a voice. When we #ChooseHope, we choose to never give up.
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Take Action:
Throughout the month of September, our goal is to raise international awareness about HH as a complex syndrome impacting children and adults. By helping us raise awareness of HH you are increasing the knowledge with your family, friends, and community as well as medical professionals who may not have experience with HH patients.
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Our site contains new information for each step along the Patient Journey, updated Research information, as well as a way you, our Hope For HH community, can Take Action and help drive the Hope For HH mission. We are truly #StrongerTogether
We've created this website as a resource for our international community of HH children, adults, and caregivers. The site is now available in English, French, German, and Spanish. Please spend some time exploring the new website, new content and send your thoughts to us here.
Make sure to check out the new Hope For HH store. This is another way to support our community and raise awareness.
A very special thank you goes out to our generous donors who made this new website possible as well as the hundreds of hours of effort put in by our Information Committee volunteers: Kristy DeBowes, Lisa Gaarn, Tomas Lampo, Lisa Soeby, Erica Webster.
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Register TODAY - Virtual Patient Conference |
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Hope For Hypothalamic Hamartomas is excited to host the international 2021 Virtual Patient Conference. The focus of the event will include providing education, outreach, and resources to our adult and pediatric community as well as discussing the challenges faced by families. Early bird registration is $20.21.
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The live presentations at this year’s event will include:
- Current State of Focused Ultrasound with a Contrast to Laser Ablation
- Mental Health and Hypothalamic Hamartoma: A Life-Span Approach
- Hormonal Changes of Hypothalamic Hamartoma: The Role of an Endocrinologist
- Genetic Basis of HH: Ending the Diagnostic Journey
- Practical Strategies to Support Memory and Executive Functions
- Beyond the Seizures: Family Impacts of HH
Breakout sessions to include:
- Sleep, stress, and mental health concerns for the adults with HH
- Sleep, stress, and mental health concerns in kids with HH
- Siblings and family dynamics
- Living with chronic stress
- The transition from pediatrics to adult care
- Alternative options for schooling
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Choose HOPE - Help Raise $10k |
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The month of September is HH Awareness Month and we are asking for your help to raise $10K to continue to support patients and families and drive the science to improve treatment outcomes! No amount is too small.
#ChooseHope and be a powerful force for CHANGE.
In fact, that could be:
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$10, the price of a couple lattes that you are not buying on your way to work.
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$100, the cost of a couple dinners and a movie that you are not sharing this month.
- $1000, the weekend trip to the beach you couldn’t make due to COVID-19.
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While these seem like minor splurges we may have given up during this pandemic, HH patients and families give up so much more every day. Lives are shattered, families are pushed to their limits.
What a great time to donate and help us continue to advocate and create hope!
Donate through our website here
Donate through our Facebook Fundraiser here
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International HH Awareness Day |
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