Introduce Yourself!

Hey everybody! I’m Lisa. I live in Kentucky and as do care not only for myself but for others who just hadn’t found their voice yet. In 2020, I was diagnosed with ovarian cancer. Then I’m 2024, after doing everything possible to find the underlying cause, I found out I was positive for a genetic mutation in my tumor suppressor gene. Basically, my body stopped functioning properly and when the mutation happened, the gene started to mass produce had cells actively dividing them and forming hundreds of tumors on my face, scalp, nose, and body.
Because my tumors were centered on ny scalp, I had now found it was called Turban Tumor syndrome. The tumors take the shape of a turban. When I was told of the genetic part of it, that was all I had. There was next to no literature,just dead's ends, and unanswered questions. This does ease and lack of knowledge caused my mental health ti almost crack. I isolated myself almost two years.
Now with the TTS/Brooke Spiegler Syndrome, it ihas been linked to front temporal dementia as well as AlS. Last summer, I began showing signs of both.
With the mounds of stress and worry mixed with the chance my children have it or can get it, something had to be done. People should never have to navigate life this way. And I prayed my kids would never have to experience it. I started. I began writing and emailing any Dr who would listen without accusing me of dr shopping . I also started writing the Governor of Kentucky. After so many failed attempts, rejections , people shunning me because they couldn’t get an answer from me about my disease, on November 12, 2025, I secured a gubernatorial proclamation from Governor Andy Beshear, recognizing and declaring the month of December the official awareness month, as there was not one at all or any recognized days for awareness for TTS/BSS. I am still trying to contact his office to let him know, by doing so, Kentucky made history by becoming the first state ever, to recognize Brooke Spiegler, NATIONALLY! (Less than 1000 people are affected) that’s 0.0001% the mental toll of this began a burning passion in me for advocating and mental health awareness. It sparked my return back to college, online, in hopes of obtaining my Bachelors of Science in Mental Health and Advocacy, where I have exceeded far beyond anything I thought I could do. I even created a community rock garden for those fighting things alone. I hand paint rocks and anybody can come grab one in hopes that it makes their smile light up and they try to pay it forward and to remind them they are not alone.
This was the most loneliest yet awarding year of my life. I’m still fairly new to this so any help or be appreciated. Attached is the proclamation.

Hi everyone, My name is Jamie M Wood I live in Oregon, and I am so excited to be here and meet you all. I just completed my Patient leadership course and am excited about all that I learned and am ready to put it into action. A little about me. I bring a panoramic view to the advocacy arena. I am a Former Licensed Practical/Vocational Nurse, living with Andersen Tawil Syndrome Familial,Hypokalemic Periodic Paralysis. Andersen Tawil (ATS) affects about 1:1 million, causing genetic heart arrhythmias,episodes of muscle weakness, potassium related paralysis, and much more. After working in healthcare for nearly 2 decades and experiencing my own diagnostic journey, I went on a hope mission to find others living with this disease. I made a facebook page to find others and how they were managing, because as a Nurse I had never heard of ATS even though I lost a sibling to it. but once I learned how to manage it, I found HOPE! I also found that those without medical literacy needed help understanding how to navigate the healthcare system. Soon I found an online support group and found my voice to be valuable.I am now a moderator for my support group. The Support network shares stories,and hosts online events.I consider it a blessing to be able to help others living with rare and chronic conditions. To be a part of this helps others worldwide, and also reminds me constantly I am not alone living with this very rare disease.
Currently I am working on sharpening my artistic hobbies,Advocacy skills, and self training my “Still in training” service dog. I am passionate about patient education for self advocacy, bridging the gap between patient and providers, and early diagnosis where possible. I am combining my skills to build a blog full of helpful resources patients may not know are available, that helps health not just the illness but a holistic approach,for the patient and everyone affected by illness. My Motto is “ You are your Best Advocate”.

I'm Andrea. I have allergies, food allergies, and asthma. And have three adult children with....wait for it.....allergies, food allergies, and asthma. (We also have other disease too)
I was an Interior Designer when we were all diagnosed 25 years ago. I returned to college to get a new degree, this time in Public Health. I have spent my Public Health career coordinating an Asthma Home Visiting program, creating content for asthma.net and allergies.net. And I run an award winning blog, My Life as an Asthma Mom. I speak at national conferences, have been published in research articles, and am active in local and national asthma foundations.
We have advocated for programming and funding for asthma and other allergic diseases for the past 10 years in D.C. We were part of a group that advocated for the FASTER act (The Food Allergy Safety, Treatment, Education, and Research) to require sesame be added to food labels as an allergen on packaged foods as well as dietary supplements.
I advocate and help people with allergies, food allergies, and asthma frequently. Even on vacation (true story)

Over the past decade, I've been through a lot with an aggressive case of prostate cancer, having been diagnosed and treated on 3 separate occasions with surgery, radiation, and hormone therapy. Along the way and thanks to who knows what, I developed Stage II non-Hodgkin Lymphoma, which fortunately was put into remission with 6 months of R-CHOP chemotherapy.



The journey has included its share of heartbreak; I battled COVID-19 pneumonia in 2021 and, tragically, lost my beloved wife of 57 years unexpectedly to pneumonia in May 2022. These experiences have strengthened my determination to advocate for others facing similar struggles.


I have served as a consumer reviewer for the Department of Defense Prostate Cancer Grant Program and as a patient advocate for the Tallwood Men's Health Center in Connecticut.

As an accredited national speaker and a former chapter president of the National Speakers Association, I deliver insightful keynote and motivational talks on men's health, aiming to inspire and empower those who need it most.