The AMDA’s Talking With Your Pompe Peeps Series
Welcome to the AMDA’s Talking With Your Pompe Peeps Series. This is a special series of open-forum style presentations born from feedback we received from our 2024 AMDA/IPA International Pompe Patient and Scientific Conference. These presentations are meant to connect the Pompe community and foster support amongst its members. Each session is moderated by a member of the community who will present and guide the discussion while encouraging participants to share their unique experiences and views. Together we are stronger!
UPCOMING SESSIONS
More Exciting Sessions
COMING SOON!
PAST SESSIONS
The Good, The Bad and The Ugly: How to Approach Unsolicited Advice and Unexpected Actions That Made Your Day
Title: The Good, The Bad and The Ugly: How to Approach Unsolicited Advice and Unexpected Actions That Made Your Day
Date: Tuesday, April 15, 2025
Time: 12 PM CT / 1 PM ET
Moderator: Tiffany House
Summary:
Many patients have shared the common experience of receiving unsolicited advice from well-intentioned friends or family members—suggestions such as lifestyle changes, home remedies, or long-held beliefs passed down through generations. While often meant to help, this advice can feel misinformed or dismissive, especially coming from individuals who do not live with the challenges of Pompe firsthand. We will explore personal reflections on these experiences, discussing not only the kinds of unsolicited advice that have felt unhelpful or frustrating, but also the moments when support from others has felt truly meaningful. We will consider what qualities, behaviors, or simple acts of kindness from those outside the Pompe community have provided real comfort, validation, or encouragement. This will be a space for open, respectful conversation where all voices are welcome—whether you wish to share your story or simply listen and connect with others who understand your journey.
*This session will be recorded and posted on the AMDA YouTube Channel, by attending, you are giving the AMDA permission to post your image on it’s channel.
To view session, click here!
Have You Ever Considered Getting a Service Dog?
Title: Have You Ever Considered Getting a Service Dog?
Date: Friday, March 7, 2025
Time: 1 PM CT / 2 PM ET
Moderator: Margaret Koehler
Summary:
Join me for this Talking With Your Pompe Peeps session, where we’ll dive into everything you need to know about Service Dogs! Deciding whether a Service Dog is right for you can feel overwhelming—I know it was for me. When my family and I were exploring the idea, I was still in college and worried about adding the responsibility of a dog to my already full plate. But looking back, it was one of the best decisions I ever made.
In this session, I’ll guide you through the key differences between emotional support animals and service dogs, the various types of service dogs, and how I ultimately chose to get mine. We’ll also explore the organizations that provide service dogs and the option of training one yourself with a professional trainer.
By the end, my goal is to answer your questions and help you feel more confident about whether a Service Dog might be the right choice for you. I can’t wait to share my experience and support you on this journey!
Moderator’s Bio:
Margaret Koehler is a Nursing student at Texas Tech Health Science Center, set to graduate in August 2025. Diagnosed with Pompe Disease at 18, she continues to live a vibrant and fulfilling life — thanks in no small part to her loyal companion, Winnie Mae. Winnie Mae, an Australian Labradoodle, joined Margaret’s journey in July 2022 and now serves as her dedicated Psychiatric Service Dog — and her partner in crime!
To view session, CLICK HERE!
Kaizen Your New Year's Resolutions: Small Steps, Big Success!
Date: Wednesday, February 19, 2025
Time: 12 PM CT / 1 PM ET
Moderator: Matt Zimmerman
Summary:
“A new year, a new you.” Studies show about 80 percent of new year’s resolutions are abandoned by the month of February. How are you faring keeping up with yours? If you are struggling along with the rest of us, this session is for you! Pick up those abandoned resolutions and join us as we look at how adapting the Japanese business principle of “Kaizen” can help you with self-improvement, time management, and habit formation. Make 2025 the year you commit to keeping those resolutions!
Moderator’s Bio:
Matt Zimmerman has been a performer since childhood. An avid theater kid and circus fan, he studied Theater at Texas A&M University in Corpus Christi, Texas and Ensemble-based Physical Theater at Dell’Arte International in Blue Lake, California. He moved to Los Angeles in 2011 where he has been working as a performer at Universal Studios – Hollywood since. He joined the AMDA as the Director of IT and Communications in January of 2022 and loves the work the AMDA is doing!
To download the slide deck, CLICK HERE!
To view session, CLICK HERE!
The Holidays - How to deal with stressors and fun family traditions
Title: The Holidays – How to deal with stressors and fun family traditions
Date: Thursday, November 21, 2024
Time: 12 PM CT
Moderator: Tiffany House
*This session will be recorded and posted on the AMDA YouTube Channel, by attending, you are giving the AMDA permission to post your image on it’s channel.
To view session, CLICK HERE!
Spooky Soirée - Enjoying Halloween with PD for You and Your Kiddos
Title: Spooky Soirée – Enjoying Halloween with PD for You and Your Kiddos
Date: Tuesday, October 22, 2024
Time: 12 PM CT
Moderator: Tiffany House
Summary:
Calling all Pompe Parents! Are you stuck thinking up costume ideas? Have you made an awesome one that you would like to share? This is your chance to share and help each other. Halloween can be a challenging time for many parents when it comes to finding the right costumes. For our Pompe kiddos, there can be added challenges when mobility issues are involved. Do you need help? Do you have suggestions? Join us and share! Please share your past costume photos!
Also related to Halloween… have you found creative ways to deal with the massive candy haul? None of us want our kiddos to miss out on these experiences, but how can we modify when needed?
*This session will be recorded and posted on the AMDA YouTube Channel, by attending, you are giving the AMDA permission to post your image on it’s channel.
To view session, CLICK HERE!
Balancing Pompe (School, Work & Life): How Do You Balance Yours?
Title: Balancing Pompe (School, Work & Life): How Do You Balance Yours?
Date: Tuesday, September 24, 2024
Time: 12 PM CT
Moderator: Tiffany House
Summary:
This Open Forum Discussion will focus on exploring the various ways members of the Pompe community juggle all of the things life throws their way. Come join the conversation!
Moderator’s Biography:
Tiffany House is President, Acid Maltase Deficiency Association (AMDA), Inc., San Antonio, Texas; a non-profit advocacy organization for patients with Pompe Disease. Hosts/spearheads biannual conference, communicates with industry, current on latest advancements in treatment and patient care, attends various scientific/patient conferences, and is Chair or member of various Working Groups or Committees.
Chairman/Board Member, International Pompe Association (IPA), Baarn, the Netherlands; an international Pompe patient support organization. The mission of the IPA is to “Campaign for early diagnosis and effective, affordable and safe therapies. Strive to provide information and support to all patients, their families and others with interests in Pompe Disease.” Board Member; participates in regular conference calls with Board and industry, annual meetings, and face-to-face meetings with industry and scientific/medical experts.
Active/Voting Member, Lysosomal Disease Network (LDN) External Advisory Committee (EAC), National Institutes of Health (NIH) Rare Diseases Clinical Research Network (RDCRN), University of Minnesota, Minneapolis, Minnesota; participates in annual meetings and communications, evaluates Pilot Project proposals and Fellowship applications, reviews clinical research and opportunities with a focus on MPS, Pompe, and Fabry diseases and two cores: administrative and education.
Member, Lysosomal Storage Disorders (LSD) Advocacy Coalition; participates in monthly meetings to work together on state and federal issues such as Medicare Home Infusion, medical research and Newborn Screening as well as state and federal issues.
Panelist, Bayer Pompe Lived Experience Expert (LEE) Standing Expert Panel (SEP); collaborates with a broad geographical spread of experts to obtain ongoing deep insights into the disease characteristics, patients unmet needs and preferences, the current standard treatments, and the potential impact of novel therapies.
Newborn Screening Advisory Committee member.
Patient Representative/Voting Member of Four Advisory Committees (AC), Food and Drug Administration (FDA), Washington, D.C.; serves as the “voice of the patient.” Active team member reviewing Lumizyme (Pompe treatment). Committed to email correspondence, teleconferences, and in-person meetings in D.C. Lumizyme AC Voting Member, evaluated application with recommendations, October 2008. Patient Representative Role guest speaker, FDA Patient Representative workshops, 2009 and 2010.
Patient Representative, Niemann-Pick Type C and NAGS Deficiency AC, January 2010; Patient Representative, Direct-to-Consumer Genetic Testing AC, March 2011.
Tiffany received her Juris Doctorate (Suma Cum Laude) in 2011 at St. Mary’s University School of Law, San Antonio, Texas and an M.A. in English, 2007 and B.A. in English, 2005 (Thesis: Pompe’s Disease: My Experiences and the Search for a Cure) at the University of Texas at San Antonio, Texas.
*This session will be recorded and posted on the AMDA YouTube Channel, by attending, you are giving the AMDA permission to post your image on it’s channel.
To view session, CLICK HERE!
The Elementary School Experience: Building Success for IOPD/LOPD Children Through Collaboration and Partnership!
Title: The Elementary School Experience: Building Success for IOPD/LOPD Children Through Collaboration and Partnership!
Date: August 16, 2024
Time: 1 PM CT
Moderator: Colleen Sackos
Summary:
This presentation will entail how to create partnerships and collaboration between key stakeholders (family, general education team, special education team, healthcare team, etc.) for IOPD/LOPD children in elementary school. While every child’s journey is unique, ALL children have a right to experience growth and success as a student! Topics include 504 plans, IEPs, how to prepare for transitioning to elementary school, and time for questions and answers. We can all learn from each other!
Moderator Biography:
Colleen Sackos is a proud mother of three and educator with over 15 years of experience as a teacher and administrator in the elementary school setting in both Oregon and Arizona. Her youngest son, Axel, has Infantile Onset Pompe Disease and just finished kindergarten. She lives in Happy Valley, OR, and is grateful to be a part of the Pompe community: together we are strong!
To view session, CLICK HERE!
Acid Maltase Deficiency Association
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