Axel Strong

12/17/2025

Please follow this page! To continue to learn what still needs to be done, educate yourself on how this whole government/healthcare system works and how you can get involved with making changes in your state!

Lesa has done amazing things for the rare disease community and continues to fight and educate about all rare diseases and making the changes this world NEEDS!

I always say “I can’t do it all, but I will” but Lesa is rare disease mom who fits that’s caption perfectly.

There’s no stopping us rare disease moms, we’re out to take over the world for the sake of our babies 🫶🏼

When can we expect states to begin screening for ?

When I create strategic NBS plans for conditions, I take into account all of the layers of complexity as well as the knowledge I have of their processes and policies (i.e., RUSP-alignment timelines, etc.).

I hope that the actual timeline is shorter for many of these states, but the reality is that adding conditions takes time. It takes resources. State NBS programs WANT to save lives, and it's our job to partner with them to make it a reality.

What can you do now? Talk to your state's NBS advisory board or program to tell your story and to ask what they might need from you to make implementation a success. Let me know if I can help in any way!

12/17/2025

I will say, we got more done going the non-traditional route than we have in the last 30+ years using “typical” methods.
Maybe, this will open a new door for better policies.

A Historic Win for Rare Disease—But a Warning for Public Health Policy

Today is a day of celebration. Metachromatic Leukodystrophy (MLD) and Duchenne Muscular Dystrophy (DMD) have officially been added to the federal Recommended Uniform Screening Panel (RUSP).

For years, the MLD and DMD communities have fought for this. In April 2025, when the federal advisory committee (ACHDNC) was suddenly disbanded, their path to screening was effectively blocked.

They didn’t wait for the system to fix itself. By taking a novel approach - publishing their evidence reviews, presenting the evidence in cooperation with the EveryLife Foundation and using that evidence to appeal directly to HHS, these advocates secured a victory that will save thousands of lives. In a year of massive upheaval, this is a testament to the power of patient advocacy.

The Impact:

Implementation: We expect all states to screen for these conditions within 5 years.

Early Action: Many states will move within the next 3 years.

Life-Saving Outcomes: Early detection is the only way to access time-sensitive treatments for MLD and DMD.

But we must be honest: This is a "Plan B" strategy, not a sustainable policy.

We cannot use direct appeals to the HHS Secretary for future conditions. To protect the integrity of Newborn Screening, we need an evidence-based approach, not a political one.

The missing piece? The reauthorization of the Newborn Screening Saves Lives Act.

We need to reinstate a formal federal advisory committee to ensure that every condition is evaluated by scientists and clinicians—not caught in a political vacuum.

At Patient Advocacy Strategies, we are proud to stand with these communities. We are ready to help your organization navigate this new, complex landscape and build a state-by-state strategy that ensures no child is left behind.

Let’s celebrate the win today, and get back to work tomorrow.



https://patientadvocacystrategies.com/blog/news/mld-dmd-added-to-the-federal-rusp-a-victory-for-newborn-screening/

12/17/2025

This is "MLD & DMD Added to the RUSP 16-Dec-2025" by Dreambuilders Resources on Vimeo, the home for high quality videos and the people who love them.

12/17/2025

Today, one of the things we’ve been fighting the hardest for, finally happened.
Metachromatic Leukodystrophy was officially added to the RUSP.

The RUSP is the federal Recommended Uniform Screening Panel, which is a list of conditions/diseases that is federally suggested each state adds to their newborn screening panels. However, each state gets to choose what they screen for.

MLD was finally added to the RUSP because we now have an FDA approved therapy that has proven to show results of stopping MLD progression before it’s too late. The key to this therapy working is finding the disease BEFORE any symptoms show- which is why screening as a newborn is so important for literally SAVING LIVES.

Today, I was overjoyed to see this dream become real life. This is what us loud mouths, who won’t take no for an answer, have been fighting for for YEARS! Long before Axel, long before we even heard the words “Metachromatic Leukodystrophy”

Today, also brought many other emotions.. happiness, excited, sadness, rage, pitty, anger..
The “it’s not fair”
The “why couldn’t we be saved”
The “if only this happened a few years earlier”
The resentment felt, that feels so selfish to say out-loud, because my Axel should have been one who gets this life saving therapy.

All I can think is this;
After coming to terms that although my baby cannot be saved from this disease, my life mission was to make sure no other families or children had to endure this type of torture.

No more families having to fight to be heard that “something isn’t right”
No more families sitting in that hospital room hearing the words “MLD” and “no cure”
No more families having to watch their child’s body give up on them.
And most importantly, no more babies living a life of pain imprisoned in a body that fails them.
Going forward all children who “have/had” MLD will get to go on living long, normal lives.

Axel was made to make changes in this world and an even bigger impact on our hearts.

So knowing we took part in making this difference soothes some of the resentment, for now.

There is a version of Axel you all see and know, but in my heart he will always be this cheesey, mischievous little boy who is free of this MLD curse 🖤 my earthside angel, making huge impacts on generations to come.

https://www.youtube.com/live/yFVAWOv3x9U?si=9UxV8TmxOo3IeAns

12/15/2025

You guys know how much we love our red light therapy lamp!
I've been meaning to share more in depth all the things this light does for Axel and the ~magic~ behind it!

It is important to know that not all red lights are created equal, and a lot only reach the surface level. You have to pay attention to the wavelengths of not just the red light, but the infrared light as well!

To actually see and feel results this is what you need to look for-
Medical Grade:
Red Light: 630-670nm [Best for skin-level effects]
Near-Infrared (NIR) Light: 810-880nm [Best for deeper effects; tissue/muscle/bone]
Suggested Use: 3-5x per week, results will show after several weeks of CONSISTENT use!

Red Light Therapy Benefits:
-Skin Health & Anti-Aging
-Wound Healing & Tissue Repair
-Pain & Inflammation Reduction
-Muscle Recovery & Performance
-Hair Growth
-Mood & Sleep Support
-Nerve Regeneration
-Brain Health

I found this one you can get 50% off with CODE: LU2URF5W
Which makes it only $25!!
If you've been wanting to try one of these bad boys, jump on this sale because I've never seen one this cheap that checks all the boxes!
Red Light: 660nm Infrared: 850nm

I am not sharing this to get y'all to buy some junk, I am sharing it because it is so important to learn how to heal yourself, naturally if you can, because we know we cannot rely on the healthcare system to do it for us.
I can honestly say I notice a difference with Axel when using the light regularly for his sore and ache body!

Red Light for Face,Red Lamp with Stand Panel Led 660nm & 850nm Light Device for Body

12/07/2025

A Very Special Christmas ❤️🎄🎁

Shopping for our medically complex warriors is always a holiday stressor for us medical parents.

Christmas isn’t about the gifts, it’s the valuable time that we know is limited.
But it’s also our duty to make Christmas as magical and special for our little ones (and bigs) as we can.

I put together some of our favorites; mixing comfort, sensory stimulation, and natural healing products we love or have been wanting to try ❤️

I hope this helps all my medical mamas and families during this typically emotional time of year 🫶

Shop recommended products from Lexi Worth on www.amazon.com. Learn more about Lexi Worth's favorite products.

12/05/2025

Holiday Gift Guide for your medically complex warrior!
Part 5; Axel’s 2025 Wishlist!
Curated by Axel, I’m just his personal assistant.

https://www.amazon.com/shop/lexiworth/photo/amzn1.shoppablemedia.v1.collage.5de470d2-6958-4f18-9f02-0882ef2659b4?ref_=cm_sw_r_apin_aip_sf_photo_spv_ons_mixed_m_4XX1K60VXADAKYHZZQ81&language=en-U

12/04/2025

Holiday Gift Guide for your medically complex warrior!
Part 4; Bath Time
Curated by Axel, I’m just his personal assistant.

https://www.amazon.com/shop/lexiworth/photo/amzn1.shoppablemedia.v1.collage.e314ff4f-28ae-4721-af8e-135bc082682d?ref_=cm_sw_r_apin_aip_sf_photo_spv_ons_mixed_m_A6GFDJQ5JMKYFF49FR37&language=en-US

12/03/2025

Holiday Gift Guide for your medically complex warrior!
Part 3; Natural Healing
Curated by Axel, I’m just his personal assistant.

https://www.amazon.com/shop/lexiworth/photo/amzn1.shoppablemedia.v1.collage.d7fbb7ae-4ee1-47d5-8c58-835b6ae90396?ref_=cm_sw_r_apin_aip_sf_photo_spv_ons_mixed_m_8JMV32B9BS3Y6E3FFGHX&language=en-US

12/03/2025

Holiday Gift Guide for your medically complex warrior Part 2; Sensory Fun!
Curated by Axel, I'm just his personal assistant.

https://www.amazon.com/shop/lexiworth/photo/amzn1.shoppablemedia.v1.collage.af26f741-af20-4f5e-8a24-2f27dbc15cc2?ref_=cm_sw_r_cp_ud_aip_sf_photo_spv_ons_mixed_d_N0848CBZ06ZB7DJC01Y7_1