Brain Aneurysm Support Community

USA Congressional Bills for 2019

Last month we were happy to go to DC for the Brain Aneurysm Lobby Day in hopes to get 3 bills passed. It’s sponsored by the Brain Aneurysm Foundation and The Bee Foundation. Two for the House and one for the Senate. We have gone a few times and it seems either the House will get it through or the Senate, but they aren’t doing it together, so no bills passed.

What we need is for everyone in the States to contact their Congressman and Senator. This is done through their specific website. You will need your full zip code, those four extra numbers no one uses anymore.

For the House of Representatives (Congress), please ask them to support two bills:
H.Res. 251 which supports September as National Brain Aneurysm Awareness Month. You can find it here https://www.congress.gov/bill/116th-congress/house-resolution/251/cosponsors?q={"search"%3A["Senator+Paul+Simon+Water+for+the+World+Act+(H.R.+2901)"]}

The second is H.R.594 Ellie’s Law it is directing the NINDS to use funds already allocated to them specifically for research in unruptured aneurysms. Ellie was the young teenager who passed away from a rupture on her second day of high school. You can find it here https://www.congress.gov/bill/116th-congress/house-bill/594/text?q={"search"%3A["S.+1238"]}

The Senate is S.864 (Ellie’s Law) https://www.congress.gov/bill/116th-congress/senate-bill/864

Let’s get ourselves, our family, our friends, the neighbors to bombard the elected officials on the Hill to get these passed! They don’t appear to want to do it unless we can light a fire under them :slight_smile:

To find your Congressperson https://www.house.gov

To find your Senator https://www.senate.gov

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Hi Moltroub, a friend of mine was interested in your post which I saw a couple days ago but it was difficult finding this post as the title is not clear that it pertains to lobbying. She plans to go to DC next year for the 9th Annual Brain Aneurysm Lobbying Day. It took some digging but I found it. However, others may completely miss this post. Appreciate that the title of this post changes to Brain Aneurysm Lobby Day (8th Annual) and filed under BAF News. It is easier to find for survivors and caregivers who interested in lobbying. Thanks

Hi moltroub, just a message of thanks for all the help you gave me when I was going through a hard time with my mam! I’ve tried contacting you through moderators and this site with no luck so I hope you get this message as I owe you a awful lot and the time you gave me will never be forgotten xx

You are so nice to let me know, thanks so much! Hope your mother is doing well. And I hope you are doing really well!

Thank you for the guidance! I will change the title. May I suggest that your friend get on the BAF email list? This way they will receive notification of the next Lobby Day in 2020. The BAF and The Bee Foundation out of NY do the hosting. There is a get together for everyone on Tues. The lawyers explain how to Lobby, give the current bill numbers as they change yearly if not accepted. And teams have been created so you’re not alone. Wednesday the teams go to their assigned Congressional members. Discussion of the appropriate bill(s) are completed with either the person holding the seat or a member of the office. It’s a long day and can be very emotional. At the end of the work day, the two groups sponsor a social get together.

I will add Christina Buckley’s new information under the BAF when I get home and can be on the computer. Thank you so much!

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Thank you, we are both doing well and I hope you are to xx

Hello!
How do you get involved with this? I am seeing things about it, and would love to be a part of as much as I can. I have not found information on how to become involved. Do you have any more information?
Thank you!
Katy

I would suggest getting on either The Bee Foundation or the Brain Aneurysm Foundation and receiving their emails. The BAF sends ours in February. We book a room where the two groups have a block of rooms.

Lobbying is in March. Right now to be involved, please contact your Senators and Congressperson. The numbers will change for next year if not passed.

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I also went last month and will continue the fight for both Elli’s Law and H.Res. 251. During our rounds I also suggested that Brain Aneurysm screening should be made part of everyone’s physical exam. Is there anyway we can get that sponsored as a bill?

I think Kevin and his crew want baby steps. Just to get any of the three bills passed would be a major kudo for us. The bill(s) they are asking Congress for this year is simply an allocation of funds the NINDS already has. As I recall, it is for research on Unruptured Aneurysms. Maybe it will be something they look into!

Thank you!Trying hard to learn how to use this site.And came upon this one.Your really do a lot of help.My brain doesn’t understand completely.
But I know it will hopefully get people to see how many peoples lives are so affected with BA 's.Thank you so so much!For all you do to help us and share to world.:joy:

Moltroub,

I would appreciate you adding me also - if it doesn’t conflict I will lobby with the group

I’m not able to add folks to either the BAF or the Bee Foundation, sorry. But it’s easy enough to go to either website and get their emails. This way when Lobby day comes up again, you’ll know as quickly as I!

https://bafound.org/