Through the power of connection and collaborations, A1F is building a more informed and empowered Alpha-1 community. These efforts drive awareness and inspire hope for improved diagnosis and care, ensuring that no one facing an Alpha-1 diagnosis has to navigate the journey alone. As we approach the last couple of weeks of Alpha-1 Awareness Month, we are inspired by the Alpha-1 community and their dedication to our mission. There are many ways that you can use “The Power to Connect,” including:
- Participating in an A1F Virtual Walk team or donating to a team. https://alpha1.org/event/2024-a1f-virtual-walk/
- Talking to your family about genetic testing and how an early diagnosis of Alpha-1 can improve the lives and health of the people you love. View resources.
- Joining the global giving movement and donating on #GivingTuesday, December 3rd! Make your donation for #GivingTuesday
“One remarkable aspect of the Alpha-1 community is the unique bond patients share.”- Scott Santarella, President & CEO of A1F
Over 60 teams have been connecting the Alpha-1 community all month long. We are excited to share highlights from the third week of Alpha-1 Awareness Month as many teams joined together and raised awareness of Alpha-1. The Alpha-1 community has hit 92% of the overall fundraising goal of $70,000!
Melanie and Craig Hamilton hosted their annual Building Friends for a Cure (BFC) event, UTAH ROCKS FOR ALPHA-1 at Spanish Fork Fair Grounds on Saturday, November 16th. This event, held for the 2nd time, doubled its fundraising from last year raising over $15,000 for Alpha-1. This classic rock concert joined over 200 people including their son-in-law’s band, Bobo’s Revenge. Funds were raised from ticket sales, a silent auction, raffle and t-shirt sales. Local support group co-leader DC Young joined the event for dancing, fun and Alpha-1 awareness.
“There are many ingredients in success. I’m grateful for the Alpha-1 Foundation for providing hope, direction, and the opportunity to serve each other. I’m grateful to my wife and family for forbidding me to feel sorry for myself and being idle. I’m grateful for my family and friends who show that love is the ultimate ingredient in our success,” exclaimed Craig Hamilton.
Week 3 A1F Virtual Walk Highlights:
- Team Captain Lisa Kosak of Breathe Easy/ Walk ‘n Wags has been walking all month long in sunny Vero Beach, Florida with neighborhood friends. Lisa has rallied amazing support from her friends and family, raising $4,180.
- Team Captains Daniel Grimm and Sydney Harris of the NY/NJ Support Group have engaged family and friends from NY, NJ, Maine and even as far as Washington to participate in their efforts. The team is proud to have members from the Columbia University Clinical Resource Center (CRC) including Dr. Jeanine D’Armiento and Dr. Monica Goldklang joining them during Alpha-1 Awareness Month to raise over $2,200 so far.
- Team Captains Laraine Potter and Lauren Foundation on Team Georgia Alphas have joined together 25 walkers in honor of her husband Greg to raise awareness of Alpha-1 and funds for research towards a cure.
- TEAM MITCH led by Team Captain Lori Mitcheroni had a great turnout on November 17th for their first (and what will become) annual walk for Alpha-1! The weather was a perfect sunny 60 degrees at John Paul ll Reservation in Boston, Massachusetts. The team walked for 2 hours and enjoyed a tailgate/picnic lunch!
“We did our best to spread the word as three generations were joined together by “THE POWER TO CONNECT! “I truly appreciated this day… the love and support of those around me gives me much needed hope and strength as I continue on my Alpha journey!”
- Karin and Mike Pittsley have been walking with their dog Bandit in their purple Alpha-1 t-shirts to increase Alpha-1 awareness in Dighton, Massachusetts. They have already exceeded their fundraising goal!
- Team Captain Terri Schroth and Team STRIVE IT Forward walked together in windy 43-degree weather in Cedar Rapids, Iowa for the Iowa Thriver’s Alpha-1 Awareness Walk.
With plenty of coffee, hot chocolate and snacks to help keep them warm, they walked up to a gorgeous iron bridge on the trail. Joined by Tammy Gilmore, Terri’s infusion nurse and her granddaughter London. Special thanks to Terri and Frank Loutsch for hosting.
“After participating in our local walk, we went to lunch and checked out the Cedar Rapids Festival of Trees, a local annual event. We wandered around and voted for our favorite trees and went through the vendor market. As you can imagine we stuck out in our purple Alpha-1 gear from all the traditional Christmas outfits. One of the vendors spotted us and introduced herself to us. She is a local Alpha that did not know that there were other Alphas local to her. We talked and exchanged information. She shared that she too had lost her older brother to complications from Alpha-1. My partner visited with her husband to discuss being a support person or caregiver. Sometimes fate puts you exactly where you need to be in the right moment. I made a new friend that I will hopefully see at our support group meetings going forward.”- Terri Schroth
Alpha-1 Awareness Month is still going strong! Continue to email your friends and family, update your progress on the “Good Move” app, and post on social media using #A1FVW24 and #Alpha1Awareness. Please send your pictures to Irene Calderon at icalderon@alpha1.org to be featured on social media and the weekly Alpha-1 Awareness Month highlight emails.
Week 3 Awareness Highlights:
Daniel Grimm, Alpha-1 Patient, Advocate and Support Group Leader, shared his lung health journey with the COPD Foundation through his patient testimony about navigating life with lung disease and the challenges that come with it. Thanks for raising awareness to the larger COPD community and discussing genetic COPD, Alpha-1!
Patty Tew, Alpha-1 patient and member of the Alpha-1 Foundation’s Medical and Scientific Advisory Committee (MASAC) was interviewed and featured in the Orlando Sentinel on Sunday, November 17th to raise awareness for COPD and Alpha-1 Awareness Month.
“I have what’s known as Alpha-1 Antitrypsin Deficiency, a genetic condition that predisposes me to COPD. Many Alphas live for years with symptoms before realizing they have a genetic predisposition to COPD. When I was diagnosed, there weren’t any local support groups, so I decided to start one myself. I didn’t know much at the time, but once you jump in, you learn quickly. I became a support leader, speaking to hundreds of people each month about COPD and encouraging them to get tested for Alpha-1. For many, it made a world of difference.
For some, symptoms might creep in gradually; for others breathing gets harder fast. By the time people are diagnosed, the disease has progressed significantly. That’s part of the reason COPD is the sixth-leading cause of death in the United States.”
The American Association for the Study of Liver Diseases (AASLD) “The Liver Meeting 2024” took place in San Diego, CA from November 15-19. The Alpha-1 Foundation proudly exhibited at the conference. Dr. Mark Brantly, Dr. Virginia Clark, Dr. Pavel Strnad and Dr. Jeffrey Teckman presented at Sunday’s symposium titled “Are you overlooking a leading genetic culprit in liver disease?” to over 200 people in-person and another 300 online.
Dr. Jeffrey Teckman delivered his research presentation to the annual “The Liver Meeting” of the American Association for the Study of Liver Diseases: A first-in-class tool to predict future risk of portal hypertension, liver transplant and death in children with alpha-1-antitrypsin deficiency based on prospective data from the Childhood Liver Disease Research Network. In summary, Most ZZ and SZ children are healthy and do well. Unfortunately, a small number develop severe liver damage, which can happen as infants, older children or even teenagers. Before now, there was no way to confidently predict which children were at high risk. In the last couple of months, information has now been released about the development of tools, using blood test and physical exam data, which can identify kids at high risk of severe disease. This presentation was the next step in announcing a major improvement in these new tools, which for the first time can give a 5 year and 10-year future risk prediction of severe liver disease in ZZ and SZ kids.
A1F was proud to host for the first time the Alpha-1 Foundation Liver Grant Awards Reception honoring the liver research that has been funded by the Foundation this year. This year’s award categories consist of 11 research grants, 4 pilot and feasibility grants, 6 of these funded grants are liver related projects. Dr. Virginia Clark introduced the 2024 Grant Liver Award recipients that were present at the event including:
- Valerie Gouon-Evans, Ph.D., Boston Medical Center
- Tamir Rashid, M.D., Ph.D., Imperial College of Science, Technology and Medicine
The Alpha-1 Research Registry team presented their poster titled “Liver Profile and Diagnostic Disparities Among AATD in the US”. Information shared on the poster was gathered from the data provided by patients participating in the Alpha-1 Research Registry. The participation of more than 3,800 participants in the Alpha-1 Research Registry, contributing to Alpha-1 research, helps A1F share information with healthcare providers at conferences, like The Liver Meeting. Connect with the Alpha-1 Research Registry team this month and enroll today! https://alpha1.org/join-the-alpha-1-research-registry
Miriam O’Day, A1F Senior Policy Advisor is attending the American Association of Respiratory Care (AARC) Congress from Nov 20-23 in Orlando, Florida. The AARC event brings together respiratory therapists of all levels and specialties to educate on pulmonary issues and to raise awareness for conditions like Alpha-1.
The 32nd Plasma Protein Forum is the premier conference for the plasma protein therapeutics industry in North America. This annual event brings industry, policymakers, health care providers, scientists and patients together to learn more and discuss key developments and issues. Scott Santarella, President and CEO of A1F moderated the session “Understanding the Alpha-1 Patient Journey: From Pediatric to Adolescence and adulthood”. The session was presented by Dr. Mike Wells, Associate Professor at University of Alabama at Birmingham and Dr. Nitika Arora Gupta, Professor of Pediatrics, Medical Director-Pediatric Hepatology and Liver Transplant at Emory University School of Medicine Children’s Healthcare of Atlanta. They shared their insights into the condition, its impact, and best practices to treat patients.
DC Young, Alpha-1 patient, Advocate and Support Group Leader, shared his Alpha-1 story and experience as an advocate to over 375 Grifols employees at their virtual employee meeting this week. Brian and Amber Pelletier, Alpha-1 father/daughter duo and Support Group Leaders, will be sharing their stories with the team later this week, as well.
The presentations from the Birmingham A1F Education Day held earlier this month are available to watch on the A1F website in the video library. Browse our extensive video library to watch presentations from past A1F Education Days, A1F National Conferences, webinars and more! Presentations from the event included:
- New & Emerging Therapies (Dr. Mike Wells)
- Pulmonary Rehab (Dr. Chad Wade)
- Lung Imaging in Alpha-1 (Dr. Sandeep Bodduluri)
Nadine Nuchovich, Clinical Research and Global Outreach Manager attended the Alpha-1 Europe Alliance’s strategic event held in Brussels on inequities in access to treatment, research needs and the development of medical guidelines. Together, we can take steps to improve how the EU and European countries support individuals living with alpha-1 antitrypsin deficiency (AATD). The event was titled Achieving Equity in Access to Care and Treatment for Alpha-1 Community in Europe: Building a Roadmap to 2030 was help on November 15th and included key opinion leaders from around the globe.
Have you used “The Power to Connect”? There is no better time than now! Learn more about what you can do to raise awareness of Alpha-1: https://alpha1.org/alpha-1-awareness-month/
