If anyone’s ever wondered about Amelia’s #BattenDisease, we did a short Zoom interview ahead of a luncheon for Haley’s Heroes, a foundation focused on supporting families dealing with the CLN1 of Batten Disease.

Edited by Kerry Drum

#rarediseases
#biotech
#biotechnology

To those dealing with rare disease every day, we see you.

To those researching first-ever treatments and cures, we thank you.

To those with the means and desire to help fund miracles, we need you.

#BattenDisease #rarediseaseday2023

Rare Disease Day is coming soon, and the Rare Disease Day site has published my wife’s lovely write-up about our Amelia. Learn more about her story and how you can help at the link below!

#BattenDisease #RareDisease #RareDiseaseDay #RareDiseases

https://www.rarediseaseday.org/heroes/batten-disease-warrior/

The cost of a single 30-second ad could also enable researchers to bring potential CLN1 #BattenDisease treatments closer to clinical trial stage — and possibly save my daughter’s life and the lives of other children like her.

#RareDisease #SuperBowl  #ultrararedisease

Content Warning: Child experiencing seizures.

Not my usual Amelia post, but these are dacrystic seizures. They can cause involuntary crying and tears. She might also feel sad, but she can’t tell us.

Another reason why #BattenDisease is horrible and why we need funding for clinical trials NOW. #clinicaltrials #cln1 #raredisease #rarediseases

Amelia has these types of “crying” seizures from time to time and they are absolutely gut-wrenching to watch.

We need funding for CLN1 #BattenDisease research NOW.

Source: https://instagram.com/cln1hopeforacure