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RARE EVENING at SOUK: A Culinary and Bourbon Experience to Remember
Date: October 8, 2023 Time: 5:00 PM - 9:00 PM Location: SOUK Kitchen & Bar, 139 South Huron Street, Toledo, Ohio 43604 About the Event: Embark on a unique journey where the art of gourmet cuisine meets the soul of fine bourbons, all set in the heart of Toledo's...
LADIES NIGHT – Gal-Pal FUN for a great cause!
The Avalon Foundation will be hosting Ladies’ Night FUN-raiser on November 3rd at Sylvania Country Club. The evening’s funds will support “Kids Caring for Kids”; a local youth leadership program that offers support to pediatric patients fighting rare disease.
TAF Board Member, Susan Hagemeyer, on why WORDS MATTER in Toledo Parent!
Our very own Susan Hagemeyer, #TAF board member, was featured in Toledo Parent! “Words Matter” discusses how the words we use matter when discussing disabilities and rare diseases. Here is an excerpt: “Susan Hagemeyer, an active board member of the Avalon Foundation...
Tips for Squeezing in Self Care
Take care of your mental and physical health without leaving home or spending a small fortune! Taking time for yourself is generally a low priority in our American culture. We are taught to work harder, faster, and longer in order to excel and attain the coveted...
#PainBoxWarrior Cora
By Lilliana Stiverson (age 13) Cora Ingariola, who is 5 years old and has HPP, is a strong little girl who keeps pushing through. Cora was diagnosed with HPP when her mom, Molly, noticed that Cora’s teeth were loose already at the age of 2. Molly decided to have...
Youth Mental Health
By Alayna Sarver (age 15) Mental health—for you and your family—is a prevalent factor in your overall well-being. Although your physical health is more noticeably assessed, mental health is equally as important! Your mental health is simply how your brain is working...
Rare News
- DeepMind develops new tool to predict pathogenicity of missense variants
- World-first AI model can detect eye diseases and predict systemic health
- First-degree relatives of patients with MASLD have higher risk of developing liver-related diseases
- VAI scientists uncover mechanism that annotates genetic information passed from fathers to offspring
- A move to cut drug prices has patients with rare diseases worried
- Same cellular mechanism implicated in cystic fibrosis and rare disease cystinosis
- Study shows not all adrenal carcinoma patients need mitotane after surgery
- Long-read sequencing reveals new details of Bartter syndrome type 3
- People with compromised immune systems less likely to have COVID-19 antibodies, study finds
- Study investigates the impact of rapid genome sequencing for infantile epilepsy
- Duchenne and other dystrophinopathies research receives major boost from new collaboration
- 3D analysis of inner ear provides insights into Ménière's disease
- Study sheds light on mechanisms behind a rare disease found almost exclusively in boys
- Penn Medicine and CHOP receive $26 million NIH grant to develop treatments for three rare genetic diseases
- Study highlights metabolite targets for depression prevention that are easily modifiable through diet interventions
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