On Tuesday October 6, we launch an exciting new Advocacy program:
AE on the Hill
Our long-term goal for the ‘AE on the Hill’ program is bold, empowering the AE community to advocate for themselves and their families at the local, state, and federal levels to improve the lives of all those affected by autoimmune encephalitis. But like with everything else in life, we have to start at the beginning. This year we begin with training.
Our AE community is diverse. Some of you are currently experiencing symptoms. Some are just receiving a diagnosis. Others are receiving treatment, and even more, are on the road to recovery. Then, there are the families and friends supporting and fighting for their loved-ones throughout this disease.
No matter where you are in your AE journey, your voice needs to be heard. You may need to:
- Convince doctors that the symptoms you are experiencing are real and tests are necessary
- Give feedback on treatment and sound the alarm bell when things aren’t going well
- Find that rehabilitation specialist that can meet your needs
- Speak to your employer on changes needed in your workplace or explain that you may not be ready to jump fully back into your job
- Appeal to insurance denials on treatments and drugs
- Secure disability benefits
- Obtain guardianship for your child
- Talk to family and friends about the impact AE has on you
- Advocate for your needs with your local city, state, or federal representative
These are just a few examples of when you need to make your voice heard. And depending on where you are in your AE journey, you will need to share your story to achieve your goal effectively.
Telling your story can be difficult – it is emotional, resurrects unpleasant memories, and is often stressful. And to be effective in advocating for yourself, you need the tools and resources to help you share your story in an impactful way.
AEA is here to help you. We are partnering with Global Genes to help us provide you with the training you need for this journey. With just a little bit of your time and commitment, you can learn to be an exceptional voice for yourself, your loved ones, and future AE patients who will walk this path behind you.
Take the first step with us in being a great advocate.