Advocacy & Awareness for Immune Disorders Association (AAIDA)

Webinars

Rare Disease Day, 2024

February 29, 2024, 4:00-5:00 ET

AAIDA is excited to co-host a special educational webinar for Rare Disease Day, 2024, with our friends at Uplifting Athletes on February 29th.  Guest speakers include rare disease patients and advocates Rob Long, Michael Cramer and Lauren Dunlap.

Rob, Michael and Lauren will discuss the following:

  • Perspectives from three individuals with rare conditions, life stages and their journey to include: Anaplastic Astrocytoma grade 3 cancer, Hepatosplenic T cell Lymphoma, Chronic graft versus host disease and Primary immunodeficiency
  • Mental health impact in living with a rare condition(s)
  • How loved ones can help address fear and anxiety when seeking a new healthcare provider
  • Intimacy, relationships, dating and marriage and conversations involved in various stages of life
  • Best practices in explaining your rare condition to others
  • Codependence with caregivers and other relationships

Rob Long has been the executive director of Uplifting Athletes, a non profit dedicated to all 10,000 discovered rare diseases, since 2018. Rob has a steadfast commitment and connection to the Rare Disease Community as a rare brain cancer survivor and his passion and drive to advance the mission of Uplifting Athletes is inspirational. As a former star college football student-athlete, Rob is a former All-American punter at Syracuse University (SU). Rob played football all four years for the Orange and was voted team captain by his teammates his final two seasons. Rob received his bachelors degree from SU and went on to pursue a Masters in New Media Management from the S.U. Newhouse School of Public Communications. 

Michael Cramer is a 22-year-old cancer survivor, bone marrow transplant recipient, social media influencer and motivational hero. Before his diagnoses, Michael was a surfer, skater, and on the Olympic Development team for windsurfing. He traveled the world competing and was the funny one on the team and full of adventure. On July 14, 2020, Michael was diagnosed with a rare and aggressive cancer, Hepatosplenic T-cell lymphoma. Less than 200 cases have ever been documented and the average survival rate is 8 months. Miraculously, more than 3 years later, he is still here!  Although he is still in treatment for many life-threatening complications from his cancer and bone marrow transplant, he is alive, in remission and inspiring others through his TikTok and IG and leads a support group for cancer survivors.

Lauren Dunlap is Executive Director and Co-Founder for AAIDA in Charlotte N.C, and is also a rare disease patient. Lauren has over 13 years experience in advocating for and educating patients living with immune disorders and overlapping conditions. In addition, she has been a go-to resource for healthcare providers for many years, by offering valuable insights and education regarding barriers to patient care, treatment and outcomes. To expand her advocacy efforts, Lauren become a board-certified Prior Authorization Certified Specialist (PACS) with the Accreditation Council of Medical Affairs in 2020. She felt this was vital to help patients better understand and navigate the prior authorization process

Following their presentation Rob, Michael and Lauren will conduct a live 15 minute Q&A session with attendees. This webinar will be recorded live and made available on the AAIDA and UA websites and YouTube channels for our community.

What’s Lurking In Your Water?

February 8, 2024

Kicking off our first webinar for 2024, AAIDA will host Prevent Legionnaires Disease President and Executive Director, Tonya Winders.

Tonya will discuss the following:

  • What legionella bacteria is, how it impacts public water systems and who is most at risk in contracting 
  • Signs and symptoms of Legionnaires’ Disease and preventative measures to take from getting an infection
  • Discussing Legionnaires’ Disease with a healthcare provider or loved ones
  • Resources available to communities and individuals who suspect legionella in their water system

Tonya Winders, MBA, is currently the President and Executive Director of Prevent Legionnaires. Tonya has over 20 years experience in leadership roles within the respiratory and immunology industries. From sales and marketing leadership to managed markets access, she has worked tirelessly to ensure patients have access to effective diagnostic and treatment tools

In addition, Tonya is also President for Global Allergy & Airways Patient Platform and represents more than 110 respiratory patient organizations throughout the world. Tonya also serves on several expert panels and is the Chair of the Board of Directors of the American Respiratory Care Foundation. Tonya also became the first patient advocate member to Global Initiative for Asthma (GINA). Tonya is passionate about her work as a fierce patient advocate who overcame cancer 20 years ago.

Following her presentation, Tonya will conduct a live 15 minute Q&A session with attendees. This webinar will be recorded live and made available on the AAIDA websites and YouTube channels

What’s $$$ Have to Do With It?

November 28th, 2023

AAIDA hosted clinical dermatologist and Past President of the American Academy of Dermatology (AAD), Mark Kaufmann, MD.

Dr. Kaufmann will discuss the following:

  • Factors driving the increasing cost of medications
  • Ways patients and healthcare providers can help drive transparency in drug pricing and expose exploitation
  • Strategies and tactics Pharmacy Benefits Managers (PBM’s) use to increase revenue and push more cost onto patients
  • Supply chain overview for prescription medications

Mark Kaufmann, MD, is a Clinical Professor in the Department of Dermatology at the Icahn School of Medicine at Mount Sinai in New York City and Immediate-Past President of the American Academy of Dermatology (AAD). Prior to joining Icahn School of Medicine in 1995, Dr. Kaufmann was in solo private practice for 23 years until he joined The Dermatology Group in November 2017. In September 2020, he joined Advanced Dermatology and Cosmetic Surgery as their Chief Medical Officer.

Dr. Kaufmann has served on the AAD Board of Directors as well as serving as Chair for other AAD committees. In addition, Dr. Kaufmann currently serves on the Board of Directors of the American Society for Dermatologic Surgery, the Florida Academy of Dermatology, and is an advisor to the AAD RUC team (Relative Value Scale Update Committee) – a position he has held for over a decade.

Dr. Kaufmann received his medical degree from New York University School of Medicine, completing residency training in dermatology at the Albert Einstein College of Medicine in the Bronx, New York and is board certified in dermatology. Dr. Kaufmann’s contributions to the American Academy of Dermatology have been recognized by his receiving a Presidential Citation in 2013, 2014, 2015, 2017, 2020, and 2022. With many articles published on the topic of health information technology, Dr. Kaufmann is a frequent national lecturer, including the AAD Annual Meeting, other national and regional societies and grand rounds.

Following his presentation, Dr. Kaufmann will conduct a live 15 minute Q&A session with attendees. 

How Cancer Became a 4 Letter Word

October 4, 2023

AAIDA hosted mother and son duo, Ashlee and Michael Cramer.  Diagnosed with a rare cancer in July 2020, Michael and his mom have embraced multiple challenges as both a patient and caregiver. Join us as they share their experience to help educate and empower others.

Michael and Ashlee will discuss the following:

  • Personal connections, relationship building and vulnerability while living with a rare condition
  • Caregiver burnout vs patient burnout and ways they can present to others
  • Challenges of living with a rare diagnoses that include intimacy, fertility and family planning outcomes
  • How mental & emotional health and well-being play a roll in the healing journey for both patient and caregiver

Michael Cramer is a 22-year-old cancer survivor, bone marrow transplant recipient, social media influencer and motivational hero. Before his diagnoses, Michael was a surfer, skater, and on the Olympic Development team for windsurfing. He traveled the world competing and was the funny one on the team and full of adventure. On July 14, 2020, Michael was diagnosed with a rare and aggressive cancer, Hepatosplenic T-cell lymphoma. Less than 200 cases have ever been documented and the average survival rate is 8 months. Miraculously, more than 3 years later, he is still here!  Although he is still in treatment for many life-threatening complications from his cancer and bone marrow transplant, he is alive, in remission and inspiring others through his TikTok and IG and leads a support group for cancer survivors.

Through it all, Ashlee Cramer, never left Michael’s side. Their relationship became an unbreakable bond. Prior to Michael’s and her late husband’s cancer diagnoses, Ashlee was a dancer turned early childhood educator turned cancer caregiver. A widow and mother of three, she kept her positive, loving, energetic outlook on life. In 2016 Ashlee created the early childhood music and movement program for Zumba called Zumbini. She had her own studio, taught classes, trained instructors, created programs and still appears on the television show “Zumbini Time”, on the cable network BabyFirst. In recent years, Ashlee and Michael started a podcast, “Michael and Mom Talk Cancer”, and soon after, a website, a blog and YouTube videos. Together, Ashlee and Michael have taken heartbreak and found the “beauty in pain.

Following their presentation, Ashlee and Michael will conduct a live 15 minute Q&A session with attendees.

Healthy Lungs for All: World Lung Day 2023

September 25th, 2023

During World Lung Day, we’d like to help educate our community on ways to keep lungs healthy as well as discuss various conditions and other factors that may impact lung health. AAIDA will host CardioPulmonary Physiotherapist, Dr. Shruti Shah, for this special World Lung Day presentation.

Dr. Shah will discuss the following:

  • Strategies to help prevent exacerbations and flares of pulmonary conditions and tips to care for your lung
  • Address inequalities in screening, diagnosis and treatments of lung disorders
  • Indoor and outdoor air pollution and the impact it has on lung health
  • Importance of early detection and screening to prevent damage or further exacerbations of underlying conditions

Dr. Shruti Shah is a CardioPulmonary Physiotherapist working in Mumbai, India. She is currently associated with Nandini Heart Clinic, Sion after working in Bhatia Hospital for two years. She is interested in spreading awareness about cardiopulmonary rehabilitation in chronic cardiac and pulmonary disorders as well as other conditions influenced by individual lifestyle factors. She pursued her Masters in cardiovascular and respiratory sciences from LTMMC – Government College in Mumbai after receiving her Bachelors degree in physiotherapy from Terna Physiotherapy College, Mumbai.

Following her presentation, Dr. Shah will conduct a live 15 minute Q&A session with attendees.