 "The mold problem just wasn’t being addressed properly. So I eventually reached out to a military housing advocacy group that was assisting other families", the Washington (state) mother of 3 explained. "This group ended up helping me get my problem resolved. I was so thankful. And, so, this became my way to pay it forward to other military families with housing needs”.' What Noelle Pacl didn't know at the time was that the skills and self confidence that she was developing in her unexpected, outside-of-her-comfort-zone leadership role as a military housing advocate would later help her to reach millions of people across the world and teach them about her son Logan's disease, Sanfilippo Syndrome.  The Pacl family, Christmas 2023 Did you know that Noelle Pacl was born and raised in Germany? True story. In fact, she lives there the first nine years of her life, and she was fortunate enough to be able to travel all over Europe during that time. That's because her father was a U.S. army officer, and the family went wherever he was called upon to serve for his country. Fast forward to the current day - Noelle is married to a Naval officer, Billy, whom she's known since high school (in Texas). Noelle and Billy (currently on 'shore' duty) have three wonderful kids that mean the world to them - older daughter Aidyn, and (fraternal) twin boys Austin and Logan. And just like the Army life that Noelle had grown accustomed to during her childhood, the Navy life is one in which you’re always on the move as well, from one naval base to the next - always a challenging transition for any family, let alone for one with a child that has severe special needs. THE DIAGNOSIS THAT CHANGED EVERYTHING Noelle's son Logan (16 years old) was diagnosed with Sanfilippo Syndrome at the very young age of 2. “I give most of the credit to Logan’s pediatrician, who was very persistent”, Noelle told said. “But the key reason we were able to see the red flags so clearly (and early) was because we were able to compare Logan to his twin brother Austin - who was walking and talking at the time, and without any of the GI medical issues that Logan was suffering from”. Shortly after Logan’s diagnosis, he was able to participate in a cord-blood transfusion clinical trial at Duke University in Durham, North Carolina. This wasn’t a “cure”, and the Pacl parents knew that going into it. And, yes, there were also (significant) physical/medical health risks associated with going through the cord-blood transfusion process alone (chemo, risk of infections, all sorts of scary possibilities). But there was also a shot at perhaps a slightly better quality of life going forward - and that matters too. Raising a medically fragile child with a terminal and life-shortening condition like Sanfilippo Syndrome (with no cure or treatment at this time) forces every family to make difficult and sometimes harrowing decisions. Fortunately Logan survived the process in good physical shape. And to this day, Noelle and her husband firmly believe that the decision (over a decade ago) to go through with the cord-blood transfusion has been a positive and beneficial decision for their son Logan. As Noelle, Billy and her their three kids bounced around from one naval base to the next, there were a lot of challenges along the way. Moving and relocating from one government-provided home to another - with new neighbors and communities each time - is exhausting, both physically and mentally. Furthermore, Billy was often out at sea on naval duty - sometimes for 2-3 years at a time - so a lot of the daily tasks of navigating the Navy spouse (and family) life fell on Noelle herself to figure it out during those periods when he's at sea... And that’s what led to her advocacy work in military housing for other military families like hers. BECOMING AN ADVOCATE “It actually all started with mold”, Noelle told me. “We had a mold problem in our home, and it just wasn’t being addressed properly (by the government agency responsible for it). In fact, it wasn't being addressed at all. So I reached out to an advocacy group that was assisting other military families with privatized housing, and they ended up helping me get my problem resolved. I was so thankful. And, so, this is my way to pay it forward to other military families with housing needs”. Noelle and a few other Navy moms started up a 501c3 called Armed Forces Housing Advocates (AFHA) in 2018, and the group continues to make a positive impact every day for military families. Noelle's focus and area of expertise within the organization is advocating for the housing/accomodation needs of families with family members with special needs and/or mobility issues. See this link to learn more Noelle's organization: https://afhousingadvocates.org/. FROM MILITARY HOUSING ADVOCATE TO SANFILIPPO AWARENESS TIKTOK STAR - "Fake it 'til you become it" Along the way - in her (volunteer) role as a military housing advocate - even meeting with legislators in Washington D.C. on a fairly regular basis (to effect legislative change) - Noelle’s self-confidence grew. She noticed that her hands (and voice) no longer trembled when, say, a reporter from the Military Times would approach her to ask her about a piece of legislation she and her group were advocating for. And it’s that very willingness to go through that difficult and sometimes scary process - to toughen her skin and improve her own skills and poise each time - that ultimately has guided Noelle in her TikTok/advocacy efforts and fundraising campaigns for Sanfilippo Syndrome and her son Logan. Noelle also happens to be an incredibly effective communicator and explainer of complex and even emotionally-charged topics of all sorts, which is why she has amassed a TikTok following of 3 million people - and has taught literally millions of people across the world that a horrible disease called Sanfilippo Syndrome (aka childhood Alzheimer’s) even exists. A few fun facts about Noelle -- Favorite band: Red Hot Chilli Peppers. Favorite movie: Kill Bill. If she had one weekend to herself, able to go anywhere in the world, what would she choose to do?: "I would want to be back in Germany exploring castles". To follow Noelle and her son Logan on TikTok, go to https://www.tiktok.com/@love_logan07. What is Sanfilippo Syndrome? Noelle explains here: www.tiktok.com/@love_logan07/video/7311444552458587435?_r=1&_t=8ilfyLmwUm2 "Whatever will be, will be": https://www.tiktok.com/t/ZT8XWQogg/ Much more to come with Noelle in the weeks and months to come (stay tuned), and we're very excited that she will be leaning into the Sanfilippo Project with us to help contribute her very important (and far reaching) voice to drive awareness and change - and to help us reach and grow new audiences. Check out the interview clip below, from our interview in December 2023, where Noelle talks about her unexpected journey from housing advocate to accidental TikTok star. And further below - at the bottom of this post - you can find the full interview. Check it out. You're really going to enjoy this one. Last but not least... Noelle - On behalf of the entire Sanfilippo community, we THANK YOU for your incredible contributions to our community (and the rare disease world at large) and the tremendous impact you and your courageous son Logan have already brought to the world. Being unexpectedly thrust into my role as a military housing advocate - and going up against some very big organizations and companies in the process - ultimately gave me the confidence to start raising awareness for Sanfilippo Syndrome on TikTok."  Sanfilippo legend Logan Pacl (type A, 16 years old) waits patiently (and joyfully) at a recent doctor visit  Noelle is the proud wife to Navy Lieutenant William Pacl  DYNAMIC DUO - Noelle and Logan having a few laughs in a corn field To watch the FULL (29 minute) interview with Noelle Pacl, click below:
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August 2024
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