A message from US HAEA President, Tony Castaldo - Remembering Michael M. Frank, MD
It with great sadness that we inform you that Dr. Michael M. Frank—a pioneer in the HAE medical/scientific arena—passed away on August 1, 2019. While at the National Institutes of Health (NIH) in the mid-1970s through 1990, Dr. Frank took a special interest in helping HAE patients. He steered significant NIH resources into groundbreaking research to figure out what was then a true medical mystery. Many of us traveled to Dr. Frank’s NIH laboratory to get a diagnosis and participate in clinical trials for emerging therapies. Our good fortune of having 7 medicines to treat HAE is the direct result of the trailblazing efforts and longstanding commitment put forth by this highly respected and extraordinarily kind human being. The HAE community remained near and dear to Dr. Frank after he left NIH to accept the Chairmanship of Duke University's Department of Pediatrics. He proudly served as a member of the HAE Association’s Medical Advisory Board, continued seeing HAE patients throughout his career, and graciously took countless calls from physicians seeking his expert advice on how to help patients.
Our sincerest condolences to Dr. Frank's family and the HAE physician/scientists he mentored over the years.
Anthony J. Castaldo
2019 HAEA National Patient Summit - Imagine the Possibilities
The HAEA wants to extend a heartfelt thank you to the over 1,000 physicians, patients, caretakers, medical professionals, scientists, and HAEA friends who traveled to Atlanta, GA for our 20th Anniversary National Patient Summit. Together, we embarked on an amazing 5-day journey filled with immersive workshops, updates on the latest medical breakthroughs and fun-filled activities for every attendee. Culminating with our HAE IN-MOTION® 5K race at Piedmont Park, the 2019 Summit proved to be our best yet!
Our first ever Professional-Scientific Program offered a wide array of presentations geared at providing the latest information on HAE diagnosis, classification, and treatment. Specialized panels included:
•HAE in Children and Pregnant/Lactating Women
•Novel Therapies: Shift Toward Greater Use of Prophylaxis?
•A Clinical Approach to Patients with HAE with Normal C1-Inhibitor
•A panel on HAE Registries
Similarly, our SUMMIT full-day patient program on Saturday provided valuable information to our members on current and future treatments for HAE, as well as discussions regarding the important role patients play as HAE advocates. Keynote speaker, former Representative Henry Waxman, took the opportunity to share his personal and professional experiences with the power of advocacy and engagement following his years of service in Congress. These amazing events were possible thanks to YOU, our members! Thanks for being a part of the HAEA family and making this 20th Anniversary Summit a tremendous success!
Tell us what you think! Click on the link below and tell us about your experience at the 2019 HAEA National Patient Summit – Imagine the Possibilities!
Youth Programs Announcements
HAEA Youth Programs - Summit Recap!
What an incredible time in Atlanta! We would like to extend a HUGE thank you to all the youth, young adults, and their families who participated in the 2019 HAEA Patient Summit Youth Programs. We had a record-breaking year with over 200 youth participating in our Summit leadership programs. None of this would be possible without YOU, our dedicated patient and caregiver community, who truly make our community great.
The HAE Global Youth Advocacy Workshop:
•Welcomed over 100 youth and young adults from 20 countries around the world and the United States to participate in the workshop activities
•Learned about HAE advocacy from some of the world's leading HAE Advocates
•Collaborated as a group to identify unmet needs in the HAE community and develop solutions
•Enjoyed a fun-filled evening at SunTrust Park with a behind the scenes tour of the Atlanta Braves stadium, a private viewing party, and a catered dinner
The Youth Leadership Program:
•A full day focused on learning about storytelling as a tool for advocacy
•Visited the Center for Civil and Human Rights
•Participated in a storytelling workshop hosted by re:Imagine ATL, a nonprofit organization that specializes in amplifying young voices through creative communications mediums
•Enjoyed a series of media-making and storytelling workshops to learn about storytelling through filmmaking, photography, visual arts, and improv
Pam King HAEA Scholarship Program
The HAEA is proud to support HAE patients as they pursue their lifelong goals and aspirations. Our scholarship program provides financial support for HAE patients seeking to improve their lives through academic achievement. Don't miss this opportunity to become a Pam King HAEA Scholarship recipient.
Social Media Internship
Apply today to join the next HAEA Social Media Intern team! Are you between the ages of 15 and 25? Are you interested in learning about social media management? Do you have 3 hours a week to dedicate to an internship? The HAEA Social Media Internship Program is accepting applications for a 5-month internship starting at the end of August 2019 which will run through January 2020. The HAEA is looking for dedicated and creative interns who can work with a team to achieve a common goal. Interns will be responsible for participating in weekly team meetings, creating and designing content for the HAEA youth Instagram page, collecting relevant content, and more.
Applications are open until August 19, so don't wait, APPLY TODAY!
Brady Club - Earn Your FREE Brady the Bear T-Shirt
Calling all Brady Club Members! Get your FREE Brady the Bear T-shirt today! Just log in to the Brady Club app on your mobile device or computer and visit the ‘Submit Your Story’ section to complete the activity and upload a photo. It's THAT simple! You just might see your story printed in the next Activity Book!
This year kids in the Brady Club:
•Participated in fun arts and craft activities
•Had a special visit from Brady the Bear
•Sang a song on stage at the 2019 National Patient Summit about "Imagining the Possibilities"
•Designed their own Brady the Bear stuffed animal to take home
Chris Whalen HAEA Compassion Fund
The HAEA offers financial assistance for patients who need to see an HAE medical specialist outside of their area, but are unable to afford the cost of travel. Chris Whalen, a founding member of the HAEA Board of Directors— served our patient community with great passion and distinction until his passing in late 2017. A professional engineer and owner of his own company, Chris provided systematic thinking that resulted in seven FDA-approved HAE medicines. Most importantly, he had a particular interest in education and awareness activities that support the HAE diagnosis. We have renamed the HAEA Compassion Fund in honor of Chris’ longstanding dedication to the idea of early and accurate diagnosis.
The debilitating effect of HAE cannot be addressed until there is a diagnosis. Please donate to the Chris Whalen HAEA Compassion Fund to help someone in need of travel to see an HAE specialist.
Back to School
Summer is winding down and school will be starting again soon! Now is a great time to get your plan in place for the upcoming school year.
For young students:
1. Make an appointment with your child’s treating physician and get a copy of your most current treatment plan.
2. Set up an appointment with your child’s teachers, counselor, school nurse, etc. Take this opportunity to make sure your child’s specific care 504 plan is in place at their school.
3. Order your FREE ER tool kits: one for the school and one for the local EMS that services the school at http://haea.org/pages/p/ERkit.
4. Download printable school resources at http://haea.org/pages/p/SchoolResources.
- Useful information on putting together a school packet
- Sample letter for the nurse at your child's school
- Information about 504 Plans
For college students:
Here are some tips for you before starting the school year!
1. Meet with your current treating physician to get a copy of your most current treatment plan.
2. Locate a knowledgeable doctor near your college or university. Call the HAEA Health Team for help.
3. Order your ER tool kits to deliver to your school’s health clinic, local ER and roommates.
4. Remember to set alarms for your treatment dates so you can stay on schedule.
"My name is Kelsie, I am from Chicago, Illinois. What it means to me to be an HAE patient is to be empowered. I had not found my purpose in life until I was diagnosed with HAE. I have been blessed by HAE and the community that comes with it.
Imagine the possibilities means that the sky is the limit. HAE does not have to be a burden; let it motivate you. Infinite doors have opened for me and the possibilities are endless for every HAE patient." – Kelsie
The HAEA Scientific Registry - together we can advance HAE research!ADVANCE HAE Scientific Registry members - your Quarterly Reports for Q2 2019 are now ready for you to fill out! Look for your notification in your email or you can access your Report today at https://sr.haea.org.
Not yet a Registry member? If you have been diagnosed with HAE or are a blood relative of someone diagnosed with HAE, you are eligible to participate.
The Summit Scientific Registry Room:
1. Over 200 Summit attendees visited the Room
2. About 80% of SR Room visitors were first time Summit attendees
3. 200 new and additional blood draws were processed
Together we Advance HAE research!
United for Charitable Assistance Luncheon for Chronic Disease Day
HAEA President Tony Castaldo, Senior Executive VP Michelle Cuevas, and HAEA Patient Advocate John Williamson visited Washington, DC to participate alongside United for Charitable Assistance Coalition in honoring Chronic Disease Day. Held annually on July 10th, Chronic Disease Day brings awareness on behalf of patients with chronic illnesses while promoting healthy practices and offering support to patients.
As part of his participation, Mr. Castaldo moderated a congressional luncheon briefing that hosted Senator Kevin Cramer, on "The Critical role of Charitable Assistance for Patients with Rare and Chronic Diseases."
The HAEA leads and stands as a proud member of the United for Charitable Assistance Coalition, working hard to ensure patients and families living with chronic conditions have access to care and services.
Health Legislative Updates!
Legislation regarding healthcare costs continues to dominate House & Senate committee action, with significant bipartisan strides in pushing various proposals for lowering costs for people with healthcare coverage. The House Energy and Commerce Health Subcommittee advanced several bipartisan health-related bills this week, including:
- the No Surprises Act, which aims to reduce “surprise” billing situations
- drug pricing transparency legislation to provide consumers greater information on how prescription drugs are priced
- a series of “extender” bills reauthorizing the Title VII & VIII health professions training programs, the National Health Service Corps, health centers, and teaching health centers
We continue to monitor deliberations before the federal appeals court reviewing a Texas court ruling that the Affordable Care Act (ACA) is unconstitutional without the individual mandate. The case puts insurance coverage at risk for those covered under the ACA and may end up before the Supreme Court.
If you would like more information, or if you would like to participate in HAEA’s advocacy efforts, please contact HAEA Patient Advocate, John Williamson at firstname.lastname@example.org.
We wrapped up an excitement-filled July with the wonderful Atlanta HAE IN-MOTION® 5K! We will be taking a break in August for the back to school season. See you in the Fall!
Saturday, September 7, 2019 - Overton Park - Memphis, TN - (Awareness Walk)
Saturday, September 14, 2019 - Burke Lake Park - Fairfax Station, VA - (5K walk/run)
Saturday, September 28, 2019 - Gabriel Park - Portland, OR - (Awareness Walk)
The HAEA is a patient advocacy and research organization committed to actively engaging our community in a wide variety of grassroots activities that promote disease education and awareness. We provide personalized services to address the unique needs of HAE patients and their families, which include helping them secure access to and reimbursement for modern HAE medicines. Our great success in supporting clinical research has resulted in a variety of FDA-approved therapeutic options. We work closely with expert physicians to continuously upgrade the patient quality of life through improving diagnosis and knowledge of the disease, and encouraging a tailored, patient-focused use of available therapeutic options. The HAEA is product-neutral and continues to enthusiastically support drug discovery research aimed at the next generation of HAE therapies.