Our Impact

Community Feedback

  • I am grateful beyond words for LCN. Being able to communicate with other parents and share stories among a community that truly understands The Hidden Cleft is so invaluable.

    Felicia Q.

  • What an amazing resource this newsletter is! So excited that mamas have a place to go to for facts and help!

    Laura P.

  • Thank you so much for putting this organization together. I know there are other parents out there that are as lost as I was in the beginning.

    Kristin O.

  • It’s incredible and inspiring to see how you are helping families affected by this condition, and how you are spreading awareness. Keep up the good work!!

    Jana J.

  • Beautiful website and a much needed resource for the community!

    Ala’a A.

  • We have uprooted our family and will likely spend six months away from home. This grant is incredibly helpful in assisting with the increased expenses we have incurred while living far from home for so long.

    Joshua S.

  • We had to stay in Cincinnati longer than we had originally planned. Knowing we would be able to use the LCN travel grant to help with lodging helped us so much. We are so grateful!

    Brittnee A.

Please share your feedback with LCN!

Travel Grant Program Recipients

LCN is honored to support the journeys of heroes born with a laryngeal cleft. We thank our donors, who have generously funded this program.

Clara - Type 4

“We traveled from Atlanta, GA, to St. Petersburg, FL, so that we could deliver our daughter under the care of Johns Hopkins All Children's Hospital, which is world renown for their treatment of children with CDH. While we knew about her CDH diagnosis, we were unaware that she also had a type 4 laryngeal cleft until her birth.

Thankfully, this hospital also has a world-renowned pediatric airway specialist, Dr. Smithers, who has also cared for Clara. We have uprooted our family and will likely spend six months away from home. This grant is incredibly helpful in assisting with the increased expenses we have incurred while living far from home for so long.”

Boston - Type 4

“Last August, Boston had surgery to repair the remainder of his original type 4 cleft and to have a stent placed. We recently returned to Cincinnati Children's Hospital hoping to permanently remove the stent, but two weeks later, the stent needed to be replaced. 

The trip from Minnesota to Cincinnati was stressful because it is over a 10 hour drive. With two toddlers, this is not ideal. Due to Boston's medical needs, we had to stay in Cincinnati longer than we had originally planned. Knowing we would be able to use the LCN travel grant to help with lodging helped us so much. We are so grateful!”

Financial Disclosures

We’re committed to financial transparency

Subscribe to our mailing list so you’ll know when we post our annual report and tax documents.

Since our inception in February 2024, our primary focus and the bulk of our expenses have been directed towards the administrative side of operations, such as establishing and registering LCN as a federal and state nonprofit organization, and subscribing to various software programs to support our ongoing operations.  Currently, we are run solely by volunteers in their respective homes, therefore no personnel nor any office rent and related expenses have been or will be incurred in the foreseeable future. We hope to raise $10,000 during 2024 to help us scale and operate on a sustainable basis year-to-year.  

Our first IRS Form 990 will be filed in early 2025. In advance of that reporting, LCN provides the following financial disclosures:

  • Our organization is entirely run by volunteers and has no paid staff. 

  • Current business operating expenses are approximately $2,100 per year. 

  • For the remainder of 2024, all donations will fund our Travel Grant Program. This program helps offset costs for families who need to travel to access medical care for their child with a laryngeal cleft. 

  • Since our website launch on October 15, LCN has awarded two $500 family travel grants. 

  • In 2025, we hope to fund and launch an awareness campaign to help families, providers, and the general public begin to recognize and better understand this hidden birth defect.

October 2024 update

Candid

We have proudly earned the Silver Transparency 2024 badge with Candid.