Intro

Have you ever thought about how the doctors know what treatments to use to diagnose and treat your brain aneurysm? Research obviously creates this but where does the money come from? A major source of funding comes through public policy and the federal government. The Bee Foundation has a strong presence on Capitol Hill through their work with Arnold and Porter. They are currently working on getting Ellie’s Law passed which would be a bipartisan effort earmarking $50 million dollars to go towards research. This funding could prevent others from having a rupture and lead to new treatments and rehab options. Learn how to support passage of this bill here.

Summary

In this episode of the Making Headway podcast, Alison speaks with Christine Kondra, Taylor Cazeault, and Michaela Stogsdill from the Bee Foundation about the critical issues surrounding brain aneurysms. They discuss the foundation's mission, the importance of advocacy and research funding, particularly through Ellie's Law, and the economic implications of brain aneurysms. Personal stories highlight the devastating impact of these conditions, while the conversation emphasizes the need for increased awareness, education, and community engagement to prevent future tragedies. The episode concludes with information on how listeners can get involved through political advocacy and upcoming events for Brain Aneurysm Awareness Month.

Keywords

The Bee Foundation, brain aneurysms, advocacy, Ellie's Law, research funding, awareness, healthcare, economic impact, personal stories, community engagement

Takeaways

· The Bee Foundation was started to honor those lost to brain aneurysms.

· Ellie's Law aims to increase federal research funding for brain aneurysms.

· Brain aneurysms affect 1 in 50 people, with a high fatality rate.

· Advocacy is crucial for raising awareness and funding for research.

· Personal stories of survivors highlight the urgent need for change.

· Economic costs of brain aneurysms are significant and preventable.

· Education for first responders is essential to improve outcomes.

· Bipartisan support is growing for brain health initiatives.

· Community engagement is vital for advocacy efforts.

· Upcoming events provide opportunities for public involvement.

Sound Bites

"This is going to be the last."

"We really wanted to focus on hope, prevention."

"Brain aneurysms are really prevalent."

Chapters

00:00 Introduction to the Bee Foundation

02:59 The Impact of Brain Aneurysms

06:11 Advocacy and Legislative Efforts

09:01 Ellie's Law and Research Funding

11:49 Economic Implications of Brain Aneurysms

15:00 Personal Stories and Experiences

18:00 The Importance of Awareness and Education

21:01 Bipartisan Support for Brain Health

24:09 Engaging the Community

26:54 Best Practices for Emergency Response

29:46 How to Get Involved

33:03 Upcoming Events and Initiatives

Reach out to

The Bee Foundation Website

Send a letter to your representatives seeking support or giving thanks using

Intro

So you had the big bad thing happen... and now you have a brain injury. You’re in every form of rehab doing the work to build yourself. An often overlooked part of brain injury recovery is finding others who have been there. Connecting with those who have lived experience helps lessen the feelings of isolation that come when your brain is no longer your buddy. In this episode Maddi Niebanck and Tawnie Romero-Golic discuss the power connection has had in their recoveries. We all challenge you to reach out and find a brain injury buddy(ies). It could be the thing that makes the most difference in your mental health post injury!

Summary

Maddi and Tawny share their experiences as stroke survivors and advocates in the brain injury community. Maddi discusses her journey with an arteriovenous malformation (AVM) and the decision to undergo brain surgery. She shares the challenges she faced during her recovery, including paralysis and the need for extensive rehabilitation. Tawny emphasizes the importance of putting in the work and the power of community in the healing process. Both Maddi and Tawnie highlight the role of their Instagram Live show in connecting with other survivors and offering support and hope. Tawnie and Maddi discuss their motivations for advocacy and raising awareness about brain injuries. They emphasize the importance of connecting with others who have had similar experiences and the power of sharing stories. They also highlight the role of organizations like TAAF in providing resources and support. The conversation explores the transformative nature of advocacy and the need for community in the recovery process. Tawnie and Maddi provide their contact information for those seeking support and connection.

Keywords

stroke, brain injury, arteriovenous malformation, brain surgery, rehabilitation, paralysis, community, support, hope, advocacy, awareness, brain injury, community, support, resources

Takeaways

· The importance of seeking connection and learning from others who have had similar experiences

· The power of putting in the work and being proactive in one's recovery

· The role of community in providing support and hope

· The challenges and triumphs of navigating life after a stroke

· Advocacy is driven by the desire to prevent others from experiencing the same challenges and misdiagnoses

· Connecting with others who have had similar experiences can provide support and help in finding the right words to describe one's own journey

· Working with organizations like TAF can offer additional resources and support for brain injury survivors

· Sharing stories and experiences helps to combat the isolation and loneliness often associated with brain injuries

· Building a community of support and connection is crucial in the recovery process

Sound Bites

"I had an AVM rupture... I was very much against that."

"I'm not just gonna wake up one day and be better, which is what I was thinking. Like I am gonna have to put in the work."

"It was like seeking connection and learning from others who have had something similar go on."

"I want to raise awareness because I don't want anyone else to go misdiagnosed"

"We're not alone. That's the big learning, I think, from all of this”

"We're stronger together"

Chapters

00:00 Introduction and Background

05:14 Journey with Arteriovenous Malformation and Brain Surgery

11:28 Putting in the Work: The...

The third in our brain aneurysm awareness month series does not disappoint! Gia Patel a teenage survivor of a brain aneurysm rupture comes on to talk about her experience and how she transformed it into an educational campaign supporting accurate diagnosis of childhood aneurysms. She also gives advice on storytelling, highlighting its importance for your recovery. Make sure to give this episode a listen and watch her documentary at Beyond a Headache Documentary.

Summary

Gia Patel, a brain aneurysm survivor, shares her story of experiencing a brain aneurysm rupture at the age of 14. Initially misdiagnosed as a migraine, Gia's symptoms included a thunderclap headache, neck numbness, sensitivity to light and sound, and vomiting. After multiple hospital visits and tests, including a CT scan and lumbar puncture, the brain bleed was finally confirmed. Gia underwent coiling surgery, but 30% of the aneurysm remained. She then had clipping surgery at Barrow Neurological Institute in Phoenix, Arizona, which successfully resolved the issue. Gia also discusses the memory loss and cognitive issues she experienced after the surgery, as well as ongoing headaches and the challenges of finding effective medications. Gia Patel shares her experience with brain aneurysm and the challenges she faced as a teenager. She discusses the difficulties of managing medications and balancing a social life while dealing with the effects of her condition. Gia also talks about the naming of her dog Ellie and the coincidental connection to Ellie's Law, a law advocating for brain aneurysm research funding. She highlights the importance of storytelling and community in raising awareness and supporting survivors. Gia also mentions her documentary, Beyond a Headache, which aims to educate and spread awareness about brain aneurysms.

Keywords

brain aneurysm, rupture, misdiagnosis, migraine, thunderclap headache, sensitivity to light and sound, vomiting, CT scan, lumbar puncture, coiling surgery, clipping surgery, memory loss, cognitive issues, headaches, medications, brain aneurysm, teenager, medications, social life, Ellie's Law, storytelling, community, documentary, Beyond a Headache

Takeaways

· Brain aneurysm ruptures can be misdiagnosed as migraines, so it's important to advocate for further testing if symptoms persist.

· Symptoms of a brain aneurysm rupture can include a thunderclap headache, neck numbness, sensitivity to light and sound, and vomiting.

· Treatment options for brain aneurysms include coiling and clipping surgeries, but the choice depends on the size and location of the aneurysm.

· After brain surgery and aneurysm ruptures, patients may experience memory loss, cognitive issues, and ongoing headaches.

· Finding effective medications for post-surgery symptoms can be challenging and may require experimentation.

· Managing medications and balancing a social life can be challenging for teenagers with brain aneurysms.

· Storytelling is a powerful tool for raising awareness and connecting with others who have similar experiences.

· Community support is crucial for brain aneurysm survivors to feel validated and understood.

· Gia Patel's documentary, Beyond a Headache, educates and spreads awareness about brain aneurysms.

· Early detection and treatment of brain aneurysms can prevent life-threatening complications.

Sound Bites

"I...