HAEA in Action October 2018 Newsletter
HAE Youth Advocacy Month - October 2018
The HAEA is excited to celebrate its first annual HAE Youth Advocacy Month. Join us this month as we spotlight young HAE patients and their family members who are making a difference by raising awareness about HAE. We challenge all of our young HAEA members to think of a way to raise awareness in your own local community during the month of October and share your efforts with us. Send any pictures and a brief description of your event to receive an HAEA PopSocket or wireless speaker
Need an event idea? There are MANY ways to get involved. Find one or more ideas below that works for you!
Awareness is an important part of educating others and developing community support for Hereditary Angioedema patients and families. Because HAE is rare, it’s even more important for every young person to spread the word.
- Order an HAE ER Tool kit and deliver it to your local hospital, emergency room, urgent care, and/or school nurse to help educate medical professionals about HAE.
- Order your tool kit and we will send it right to your door: https://www.haea.org/ERkit.php
- Share information about HAE with your friends, family, or local community members. The HAEA is happy to send you HAE infographics - handouts that make learning about HAE easy and fun. We can also send you great giveaways to hand out (HAE bracelets, stickers, buttons, and CME cards)!
- Send an e-mail to email@example.com and tell him what you’d like us to send and how many!
- Post information about HAE on your own social media! Spread the word online! Be creative and post a fun video you create, ask us to send you an informational graphic to post, or simply share one of the HAEA’s social media posts on Facebook, Twitter, or Instagram!
- Contact your local newspaper or news station to share your HAE story - the news loves to highlight young people who are overcoming extraordinary circumstances.
Advocacy is important because it can change the mindset of someone who is in a position to make the higher-level decisions that impact you.
- Send a letter to your Senator or State Representative, encouraging them to keep your best interests, as a patient with a rare disease, in mind when they make decisions that will impact you and your family. We are happy to send you a template email or letter for you to send out.
- Sign up for the HAEA Legislative outreach program by contacting John Williamson firstname.lastname@example.org
There are many ways that you can inspire others to make a difference in the lives of HAE patients and fundraising is one of them! Funds raised go to three key HAEA programs to support patients: The Pam King HAEA Scholarship Program, the HAEA Compassion Fund, and HAE Research.
If you need help thinking of a way to raise awareness, you can watch the most recent Youth Edition Webinar: Fundraising and Advocacy in the HAE Cafe or email Lisa Facciolla at email@example.com
- Host a fundraising/awareness event at your school or community center (talk to your school to host a special event for a donation.)
- Participate in an HAEA IN-MOTION® 5K run/walk event. There are 5K’s held at different locations around the US throughout the year and two of them are scheduled for October. Sign up to join us for a morning of fun, or start your own 5K Virtual Team! You can encourage your friends and family to join in and create competing teams!
- Encourage your friends, family, and local community to make their online purchases using Amazon Smile; donating 1% of all purchases to the HAEA.
- Fundraise online through the Facebook Fundraising page or a crowdfunding page like Indiegogo.
2019 Open Enrollment for Health Insurance Starts Next Month
Open Enrollment for next year’s Health Insurance Marketplace coverage will run from Thursday, November 1, 2018, to Saturday, December 15, 2018. Coverage starts on January 1, 2019. If you don’t have insurance through a job, Medicare, Medicaid, the Children’s Health Insurance Program (CHIP), or another source, the Marketplace can be an important insurance coverage resource.
For more information on Open Enrollment, please join us on Thursday, October 18th at 7:30 pm for a special webinar: A Guide to the Health Insurance Marketplace with HAEA Health Advocate, Troyce Venturella. You will be able to submit your questions at any time during the webinar and our HAEA Health Team members will help guide you through the enrollment process.
HAEA Teams Come Together For Patients And Planning
The HAEA Teams came together in New Jersey to plan for 2019, and to support the HAE patient community during their HAE IN-MOTION® 5K event in the beautiful Nomahegan Park in Cranford, NJ. HAEA staff spent the week reviewing future plans and HAEA member needs to better serve our entire community.
Connect Through A Support Group
Try a little self-care! Join other HAE patients, caregivers, and family members as they share their day-to-day life experiences. We all need time to process and reset. A support group can help you cope better and feel less isolated as you make connections with others facing similar challenges.
For more information or to join a group, please contact HAEA Health Advocate, Troyce Venturella at firstname.lastname@example.org.
*Groups are currently meeting every other week (all are listed in Eastern Time):
Tuesday 12 noon
Tuesday 9:30 pm
Wednesday 7:30 pm
Thursday 11:00 am (mostly parent caregivers)
Thursday 7:30 pm
Help Protect Charitable Assistance Programs
Nearly three-quarters of a million Americans receive support from charities, local and national, to help pay for their therapies and medications – support which can often mean the difference between life and death. Recently, insurers in 41 states have begun denying coverage to Americans living with debilitating diseases, simply because they receive assistance from charities.
Many HAE patients count on some kind of charitable support to help pay for their HAE therapies. H.R. 3976 is the Premium Assistance Bill created in the House of Representatives to amend the Patient Protection and Affordable Care Act that allows for certain third party payments. The Bill intends to revise the rule and allow charitable organizations to be charitable.
Access to Marketplace Insurance Act (H.R. 3976) has gained approximately 176 bipartisan cosponsors in a relatively short amount of time. However, in order to move the bill out of the House this year, we need your help to convince members of Congress to sign on and support H.R. 3976.
We want to make sure that our HAE patients’ voices are heard loud and clear on the importance and impact this bill will have on our community. In order to do this, we ask that you reach out and tell your members of Congress to cosponsor H.R. 3976 - to support this important legislation affecting the lives of rare disease patients. – We can help you reach out to your Representative.
November Is Caregiver Awareness Month
November is National Family Caregiver Month and the HAEA would like acknowledge these caring people and the effort they make every day to help their HAE loved ones achieve lifelong health.
To celebrate Caregiver Month, we would like to feature stories about the unconditional love and commitment demonstrated by HAE caregivers. If you are an HAE patient, please share a brief video or email describing all that the caregiver in your family does for you, and the difference he/she makes in your life. If you would like, you can include a picture that we can post along with your story. We will feature some of these stories throughout the month of November on our different social media platforms.
Dear HAEA Kids and Families,
The HAEA is proud to launch some exciting new features of the Brady Club and we would like to invite you and your family to participate. The Brady Club is now available for download on your mobile device. Find it on the Android and IOS app store, under the Brady Club (*Look for Brady the Bear on the app icon). Once you download the app, register on our secure platform to gain access to all the features!
We want to make it fun and easy for your kids to learn about HAE!
1. Download The App
3. Have Fun
4. Get Free Stuff In The Mail
Once you download the app and register, your kids will be signed up to receive a quarterly Activity Book in the mail. The Brady Club Activity Book is filled with fun games, information, photos and stories from other kids with HAE, and a special kids corner where an HAE specialist will answer questions about HAE.
HAEA Scientific Registry Quarterly Reports Are Coming Soon! It’s a brand new Quarter for Scientific Registry members. Your new Quarterly Report will be available on October 1st! Mark your calendars and fill out your Report online at https://sr.haea.org Help us advance our knowledge of HAE with every Report you submit to the Registry! Not yet a member and want to join?
HAEA Café Webinar: Managing The Burden Of Hae, A C1-inh Deficiency DiseaseLink: https://bit.ly/2OEuTZ1
Phone: +1 646 558 8656 (Webinar ID: 385 100 861)
Please Let Us Know You will Be Attending Here!.
Saturday, October 6th HAE IN-MOTION® 5K Event At Roger Williams Park - Carousel Village, Providence, Rhode Island!You can help fundraise for the Pam King HAEA Scholarship Program on our next HAE IN-MOTION® 5K event on Saturday, October 6th at Roger Williams Park - Carousel Village, Providence, Rhode Island! Fundraise $500 individually or with your virtual team, and you and a guest can attend our 1st Annual HAEA Pam King Scholarship Program Benefit Event on Friday, October 5th. The Providence 5K is dedicated in loving memory of Pam King, who passed away from metastatic breast cancer on June 16th, 2018. Pam worked with the HAEA for the past ten years and was responsible for developing the Scholarship Program which we have renamed in her honor. All funds raised during the Benefit Event as well as the Providence 5K will go toward the Pam King HAEA Scholarship Program.
Saturday, October 20th HAE IN-MOTION® 5K Event At Vista View Park, Davie, Florida!
Register For the Davie Florida 5K Here!
The HAEA is a patient advocacy and research organization committed to actively engaging our community in a wide variety of grass roots 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 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.