This Saturday, November 22, on A Moment of Xen, @xensams welcomes Noelle Pacl @love_logan07 —Navy spouse, mother, and advocate — as she opens up about her son Logan’s journey with Sanfilippo Syndrome, a rare and devastating condition often called childhood Alzheimer’s.
Together, they shed light on the realities families face, speaking with honesty, courage, and heart — reminding us that awareness saves time, strengthens community, and inspires hope. 💫
We Play It Forward Foundation is honored to help shine a light on this important cause and the families fighting for a cure. 💜
🎧 Listen Live: Saturday, November 22 at 9 PM EST on @iheartradio@iheartmediaofficial (@wor710 WOR – The Voice of New York)
📢 Every listen helps raise awareness and supports families on this journey.
#SanfilippoSyndrome #WePlayItForwardFoundation #AMomentOfXen #XenSams #NoellePacl #ChildhoodAlzheimers #LogansJourney #RareDiseaseAwareness #iHeartRadio #710wor #RareDiseaseCommunity #WePlayItForward #TogetherForACure #SanfilippoAwareness #HopeForFamilies
All New 'A Moment Of Xen' @iheartradio@wor710 (full interview on our YouTube channel) Link In Bio✔️
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🌻Joining us today is Carrie Fowler @haidynshope
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✨ spotlighting a rare and devastating disease: Sanfilippo Syndrome - sometimes referred to as childhood Alzheimer’s.
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Carrie is an influencer, medical mama, author, and fierce advocate for her daughter Haidyn, who is courageously battling Sanfilippo.
We Play It Forward Foundation (raising funds for Sanfilippo Syndrome research)
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@weplayitforwardfoundation
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#amomentofxen #geneticdisorder #sanfilippo #sanfilipposyndrome #childhoodalzheimers #childhooddementia #raregeneticdisorder #xensams #charity #fundraising #sanfilipposyndromeawareness
This Saturday, October 11, on A Moment of Xen, @xensams welcomes Carrie Fowler ( @haidynshope ) — a devoted mother and advocate — as she shares her emotional journey to save her daughter Haidyn and raise awareness for Sanfilippo Syndrome, often called childhood Alzheimer’s.
Together, they talk about love, strength, and the power of community — reminding us that every voice and every story can inspire hope. 💫
We Play It Forward Foundation is honored to help shine a light on this important cause and the families fighting for a cure. 💜
🎧 Listen Live: Saturday, October 11 at 9 PM EST on @iheartradio ( @wor710 WOR – The Voice of New York)
📢 Every listen helps raise awareness and support families on this journey.
#SanfilippoSyndrome #HaidynsHope #WePlayItForwardFoundation #AMomentOfXen #XenSams #CarrieFowler #ChildhoodAlzheimers #HopeForHaidyn #RareDiseaseAwareness #iHeartRadio #710WOR #RareDiseaseCommunity #WePlayItForward #TogetherForACure
Sanfilippo Syndrome may not follow a predictable path, and experiences can vary.
Understanding this helps explain why each case can look different.
#SanfilippoSyndrome #RareDiseaseAwareness
Sanfilippo Syndrome does not always begin with a clear starting point.
Understanding how conditions can develop gradually helps people see the bigger picture.
#SanfilippoAwareness #RareDiseaseEducation
Sanfilippo Syndrome is not always immediately understood, as it develops over time.
This is one of the reasons why rare diseases can take time to fully recognize.
#SanfilippoSyndrome #RareDiseaseEducation
Sanfilippo Syndrome is often understood through information gathered over time from different sources.
This can make the process feel complex before everything becomes clearer.
#SanfilippoAwareness #RareDiseaseEducation
Sanfilippo Syndrome is not always immediately noticeable, which can make early understanding more complex.
Learning how different rare conditions present helps people recognize that not everything is obvious at first.
#SanfilippoSyndrome #RareDiseaseEducation
Many people first learn about Sanfilippo Syndrome through stories shared by families.
Sharing experiences helps build awareness and understanding of rare diseases.
#SanfilippoSyndrome #RareDiseaseAwareness
Sanfilippo Syndrome is often understood only after changes become visible, but the process develops over time.
Sharing this helps others understand the full journey.
#SanfilippoAwareness #RareDiseaseCommunity
Families affected by Sanfilippo Syndrome often learn continuously as they gather information about the condition and care.
This learning process plays an important role in understanding rare diseases.
#SanfilippoCommunity #RareDiseaseFamilies
Understanding Sanfilippo Syndrome often happens step by step as more information becomes available.
This process helps explain why clarity may take time.
#SanfilippoAwareness #RareDiseaseEducation
