June 2019                                                                                        Volume 30, Issue 6
International Batten Disease Awareness Day Recap

Thank you everyone for your incredible support for International Batten Disease Awareness Day! We loved reading your Batten stories, seeing your Bounce 4 Batten and Love.Hope.Cure. pictures, and watching how across the globe people were learning about Batten disease. 

You can see pictures from the day on the International Batten Disease Awareness Day page as well as on the BDSRA Instagram stories. If you haven't had a chance to send us your photos message them to to the page or email Noreen Murphy at nmurphy@bdsra.org

The International Batten Disease Awareness Day Virtual 5K was a huge success! 
We had 190 participants , 20 teams and raised over $7500 for research. 

Congratulations to Team Super Sam with 26 team members!

Thank you to all who participated, we could not do any of this without your support!
Resource Corner: We're Going Mile High 

Tips for Traveling to Denver

We're excited to see you all soon in the Mile High City. As we prepare for Annual Conference we wanted to share some tips for having a pleasant trip to Denver with its higher elevation. The following tips can be found in detail on the Denver.org site.

Drink Water - staying hydrated before and during your trip will assist with the lower humidity. You will need to drink about twice as much as you need at home. 

Monitor your alcohol intake - the reduced oxygen make alcohol feel strong. Be mindful in your consumption that you may be affected differently than home. 

Eat foods high in potassium - foods like broccoli, bananas, avocado, cantaloupe, celery, greens, bran, chocolate, granola, dates, dried fruit, potatoes and tomatoes will help you replenish electrolytes by balancing salt intake.

Watch your physical activity - take it easy on yourself. The effects of exercise are more intense here. If you normally run 10 miles a day at home, you might try 6 miles in Denver.

Pack for sun - Denver is especially sunny, boasting 300 sunny days a year. But with its elevation there is less sun protection; bring sunglasses, sunscreen, protective clothing, and lip balm.

Dress in layers - Two days before your trip to Denver, check the weather and use this information to pack appropriately. Because the sun is especially powerful in Denver, it can feel much warmer than the actual temperature during the daytime, but then become very chilly after sundown, particularly in the Spring and Fall. It is best to layer your clothing.

BDSRA Annual Conference Updates

Registration closes Tuesday June 25th! 

You will be able to register on site but we will not be able to guarantee you conference t-shirts or meals. 
Not able to attend but want a t-shirt? Place your order  here  by June 28th. Shirts will be mailed the week of July 29th.

Interested in volunteering at conference? You can sign up here

We have extended the submission deadline for research posters, you can view the details here. Posters are now due June 25th!
BDSRA Memorial

The Batten disease community is one of support and strength, and we know that remembering loved ones is so important to you and your family. If you would like to have a name added to the Batten Disease Memorial, please complete this form no later than July 8th, 2019.  

Recent Fundraising Events

This month we have new Facebook fundraisers organized by:


We are so excited each day to log in and see the list of your names growing. Thank you for sharing and supporting our mission on social media!
In Loving Memory 

Remember with us those we have lost to Batten disease.  It's in their honor and memory that we work every day to build a brighter future for families.

Thank You BDSRA Community of Donors! 

Thank you to the donors last month who gave so generously to honor and in memory of loved ones and our community as a whole. We want to acknowledge you for your contributions. They allow us to keep serving families and advancing the science of a meaningful treatment. Your dollars and support have helped create the leading patient organization in the Batten disease community, and we are dedicated to continue that legacy of children and families. 

View recent donor gifts
Batten Disease Support and Research Association | (614) 973-6013 | i nfo@bdsra.org | w ww.bdsra.org