Cure ADNP Prayer Warriors Group

28/02/2026

Happy Rare Disease Day! 🙏🏼🌎🧬🧫🧬🔬🥼🧪

David J. Segal, known for advances in gene-editing technologies, has been appointed chair of the Department of Biochemistry and Molecular Medicine.

28/02/2026

Isaiah 55:8-9 — A Reason for Hope! This scripture declares that God's thoughts and ways are vastly superior to and different from human understanding, much like the heavens are higher than the earth. This passage highlights God's infinite wisdom, sovereignty, and, in context, His immense capacity for mercy and forgiveness, encouraging trust in His higher plans. 👆🏼🙏🏼♥️
Key Aspects of Isaiah 55:8-9:
"For my thoughts are not your thoughts, neither are your ways my ways, declares the LORD. For as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts"Context: Situated in a chapter inviting people to repent and find free, abundant salvation, these verses emphasize that God's grace and ways of thinking surpass human logic.
Meaning: It highlights the limitation of human perspective compared to divine omniscience, urging believers to accept that God's ways are higher and often inscrutable.Application: It is frequently used to comfort those who cannot understand their circumstances, reminding them to trust in God's superior, loving, and sovereign plan.
These verses are often paired with promises of divine power and grace, such as Ephesians 3:20 🙏🏼👆🏼♥️

28/02/2026

Yesterday, the EveryLife Foundation for Rare Diseases was thrilled to host the Rare Disease Congressional Caucus briefing as part of Rare Disease Week 2026. We were joined in-person by Senator Amy Klobuchar and via video message by Representative Gus Bilirakis, two of the Co-Chairs of the Caucus. The panel included Ron Bartek, Co-Founder of the Friedrich's Ataxia Research Alliance; rare disease advocates, Michael and Allison Beacham and Brittany Clayborne; and Jamie Sullivan, Senior Vice President of Policy & Advocacy for the EveryLife Foundation.

The hearing was moderated by James Valentine, Director at Hyman, Phelps & McNamara and a member of our Board of Directors with welcoming remarks from Janelle Gillings, Director of Policy and Government Relations at Merck..

Senator Klobuchar outlined some of the major wins our rare disease community has seen recently: the creation of the Rare Disease Innovation Hub, and the passage of both the Give Kids a Chance Act and the Accelerating Kids Access to Care Act.

Senator Klobuchar also called out the need for consistent funding to the NIH, increased incentives for clinicians to ensure accessible rare disease treatment, and increased funding toward staffing in both hospitals and research institutions.

Representative Bilirakis emphasized the need for bipartisan leadership in Congress to address the needs of the rare disease community. He also spoke about the importance of targeted incentives and strong, patient-centered policies in order for life-saving innovation to exist, as well as what a critical tool newborn screening is to detect rare diseases early and begin treatment. Said the Congressman, "Awareness alone is not enough, action must follow."

Our incredible rare disease advocates shared their powerful stories about their own journeys, exemplifying the need for patient involvement in rare disease policy. The panel discussion revolved around priorities for our community, such as consistent and reliable Newborn Screening programs, federal support for biological research, and patient engagement in the therapy development process.

Jamie also shared how Congress can address the gaps represented in the speaker’s stories, including advancing timely diagnosis through newborn screening and access to genetic testing, continuing to fund biomedical research, and engaging with the FDA to ensure all the tools that Congress provided the FDA for accelerating rare disease therapy innovation are used consistently.

After this standing-room-only event, the community was back on the Hill for more meetings with their Members. Thank you to everyone who attended in person or joined the livestream!

ICYM watch the recorded livestream here: https://www.youtube.com/watch?v=ukFbSZYOY0o&t=3s

And check out the video message from Rep. Bilirakis:
https://youtu.be/kIHXUNLp99M

07/02/2026

https://m.youtube.com/watch?v=O8D3T3-ds_c

This a young man ,who was diagnosed with Duchenne Muscular Dystrophy, speaking about idolatry & how God can let his purpose & will for one's life be known through suffering & pain endured. Video can be found on UTUBE if you want to like & share.
For God's glory, alone! ♥️🙏🏼♥️

Enjoy the videos and music you love, upload original content, and share it all with friends, family, and the world on YouTube.

07/02/2026

Enjoy the videos and music you love, upload original content, and share it all with friends, family, and the world on YouTube.

07/02/2026

This is great! Duchenne's Muscular Dystrophy is a devastating disease. This young man speaks of idolatry & also God's purpose for everyone's life. On UTUBE if you want to LIKE & SHARE. Some diseases are genetic. Even through suffering, God can make his will & purpose for each of our lives known. Some people are given the gift of advocacy & for all his glory! ♥️🙏🏼♥️

Enjoy the videos and music you love, upload original content, and share it all with friends, family, and the world on YouTube.

07/02/2026

SHARE & PRAY. Finally the world will see the injustices for cures being held back.
♥️🙏🏼♥️✝️

Correspondent Scott Pelley takes viewers inside the reporting process for this week's piece on potentially life-saving drugs with enormous price tags."60 Min...

07/02/2026

Asking God for provide justice for all the children who suffer. ♥️✝️♥️ Please share.

Correspondent Scott Pelley takes viewers inside the reporting process for this week's piece on potentially life-saving drugs with enormous price tags."60 Min...

07/02/2026

A diagnosis does not define a person's worth.

But it can shape a person... & their life experiences...
AND that is worth acknowledging.

No-one is here by mistake.
HOPE goes where medicine can not.

Cure ADNP ♥️🙏🏼♥️✝️

21/07/2025

I see we have new followers!
Today at church... a reminder of Jesus & his words.
James Chapter 1 , Verse 1-4:
"Consider it pure joy, my brothers and sisters,[a] whenever you face trials of many kinds, 3 because you know that the testing of your faith produces perseverance. 4 Let perseverance finish its work so that you may be mature and complete, not lacking anything"

He said WHENEVER.. in this broken world we will face trails. Let go & Let God. Thank you for blessing ADNP children/patients. ♥️🙏🏼♥️

19/12/2024

When treatments are coming & we can not clear the path ourselves to find the the heart of the place that is willing & able for the misson. We ask you make divine interventions & appointments & please clear the path God. We ask you in this holy season to hear our prayers & move the mountain & part the sea as you have done before. In Jesus's name we pray, AMEN. 🌲🙏🏼♥️

16/11/2024

♥️🙏🏼♥️

Advocates for people with rare diseases say a government voucher program has been crucial to pursuing treatments. That program is due to sunset at the end of the month.