Love for Lilly

Love for Lilly Sweet Lilly was born with a rare genetic connective tissue disorder called Epidermolysis Bullosa EB comes with numerous challenges aside from dressing changes.

Epidermolysis Bullosa (EB) is a rare genetic connective tissue disorder that causes painful blistering of the skin and the mucous membranes. It affects one in every 50,000 live births and can often times be fatal within the first year. Those affected lack the proteins that prevent the skin layers from acting independently from one another resulting in extreme fragility of the skin. This means that

the slightest of touches, even a hug can cause excruciatingly painful blisters and wounds. These wounds are very susceptible to infections which can often times be lethal. In order to protect the skin from infections and additional wounds, one must be wrapped in special bandages that do not adhere to the skin. These bandages must be changed frequently…a tedious and painful process. However since there is no cure, this is the only effective treatment. Despite any amount of care, wounds still occur and with the wounds comes scarring. This scarring can cause deformities in the hands and feet as the skin begins to fuse together often resulting in a clubbing effect. Another complication as a result of the chronic damage to the skin is cancer, which it typically fatal in these cases. In addition to physical trauma, suffers also endure mental and emotional pain as well. For more information, please visit https://www.ebresearch.org/

05/14/2025
04/29/2025

🚨 MAJOR BREAKING NEWS 🚨

Today, the EB community takes a huge step forward with the FDA approval of Abeona Therapeutics Inc's ZEVASKYN™—the First-Ever Autologous, Cell-Based Gene Therapy for Recessive Dystrophic Epidermolysis Bullosa (RDEB)! 🙌💙

This breakthrough is more than a treatment—it’s proof of what’s possible when we work together. Funded early by EBRP through our Venture Philanthropy Model, this approval fuels our mission and brings new hope to families everywhere.

“The mission of EBRP is to advance commercially sustainable research aimed at treating and ultimately curing epidermolysis bullosa. We are honored to partner with the entire Abeona team and commend their leadership, determination, and passion to deliver much needed innovative solutions for individuals and their families living with EB. They share our values and commitment to accelerate treatments to the EB community as quickly as possible. Abeona's development and advancement of ZEVASKYN delivers a landmark moment for the global EB community, and their leadership in gene therapy holds so much promise to innovate the therapeutic landscape for not only EB, but many other rare diseases and conditions.”
-Michael Hund, EBRP CEO

To read EBRP's press release, visit: https://bit.ly/44eEgZ9
For more information on ZEVASKYN, please visit: https://zevaskyn.com/

Happy 11th birthday to the most amazing, unique, funny, smart, sassy kid on the planet. You’re growing up to be such a g...
04/18/2025

Happy 11th birthday to the most amazing, unique, funny, smart, sassy kid on the planet. You’re growing up to be such a great human being. ❤️❤️❤️ Mom loves you so much.

Section 504 of the Rehabilitation Act protects individuals with disabilities and allows them to access health care, educ...
02/16/2025

Section 504 of the Rehabilitation Act protects individuals with disabilities and allows them to access health care, education, and employment. Seventeen states have filed a lawsuit in Texas that could declare the entirety of Section 504 unconstitutional.

With so much in the news about cutting costs, with a goal of efficiency over all the parents of kids with serious chronic illnesses,they are absolutely sick with worry for their children. They require wound care supplies that cost about 10-15k monthly. There are two FDA approved treatments for the condition that hopefully will help close the many wounds they have on their body’s faster ,and they are incredibly expensive. We rely on medical research to find ways to reduce the suffering. In order for them to be able to go to school, they require an aide, a full time employee whose sole job is to make it so that they can be able to come to school. Parents, us included are waiting with dread when we will hear that her medication is no longer able to be paid for, the research no longer has funding, or that the FDA approved treatments for their Lillys condition are now considered to be an expense worth cutting.

I want to advocate for the protection of 504. The removal of 504 protections would take away chances to learn, thrive, belong, and make the world a better place for countless Americans, and more personally, my granddaughter and many friends.

If you would like to help the many amazing people who benefit from 504, please follow the instructions below to count in the numbers voicing concern regarding this lawsuit.
Please open the link and sign the petition and send it to the governor. We cannot lose the section 504. Millions of lives depend on this.i have posted a pic in the comments with phone numbers and whom to contact incase you want to call. If you live in the state of ohio. Also posted here. —-> Senator Husted, Jon
State: Ohio
Contact:
198 Russell Senate Office Building Washington, DC 20510
(202) 224-3353
Contact
2. Senator Moreno, Bernie
State: Ohio
Contact:
B33 Russell Senate Office Building Washington, DC 20510
(202) 224-2315
Contact
3. Representative Rulli, Michael A.
State: Ohio
Contact:
421 Cannon House Office Building
(202) 225-5705
Contact
CONGRESS.GOV

Please go to the link and sign the petition and send this to the governor. Without the support from the section 504 ,
Lilly along with millions would be severely affected ! This is a for real issue and we (Lilly and Family) as well as many other families are very concerned and worried that they will lose their benefits that they so desperately need and is their lifeline.

Right now, a lawsuit called Texas v. Becerra is putting vital disability protections at risk. Seventeen states are suing the U.S. government to get rid of Section 504 of the Rehabilitation Act, a federal law that has safeguarded disability rights for over 50 years. If successful, this lawsuit could....

Lilly headed to school.  Now enrolled at Marietta Elementary.  4th grade.  Have a great day. Marietta Elementary School ...
10/21/2024

Lilly headed to school. Now enrolled at Marietta Elementary. 4th grade. Have a great day. Marietta Elementary School Marietta City Schools - Marietta, Ohio

10/17/2024

🦋 Join The Effect 🦋

Every month, our community grows stronger, more resilient, and more determined. By joining The Effect, you’re not just giving; you’re driving the momentum to find a cure for EB. 💙

🌟 Your monthly donation can fuel groundbreaking research and bring us closer to a world without EB. Even a small monthly donation can create hope in a big way. Join today. [LINK IN BIO]

This kiddo is a rockstar. 2 more procedures done today and she’s completely cool, calm, and collected. 🥰😘😍
09/24/2024

This kiddo is a rockstar. 2 more procedures done today and she’s completely cool, calm, and collected. 🥰😘😍

Thank you to Ben and Connie Thomas! Lilly loves it!!!
09/14/2024

Thank you to Ben and Connie Thomas! Lilly loves it!!!

Address

Marietta, OH

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