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"Aerodynamically, the bumblebee should not be able to fly.
But, the bumblebee does not know that so it goes on flying anyway."
~Mary Kay Ash

FAQ’S ABOUT GLOBAL HYDRANENCEPHALY FOUNDATION

1. How does the Global Hydranencephaly Foundation operate within the definition of a Non-Profit organization?

The Brayden Alexander Global Foundation for Hydranencephaly is a legal Corporation licensed as of June 24, 2011, in the Commonwealth of Virginia, and is doing business as Global Hydranencephaly Foundation. The Corporation is approved as 501(c)(3) tax exempt status with the Internal Revenue Service as of our filing date of June 14, 2011 (Though thanks to backlog at the IRS we did not get our official letter to this effect until March 2014). This means we can accept tax deductible donations, are exempt from paying income tax, and are legally a public charity and thus a non-profit corporation!

We are a newly formed NPO, and as such, all Board members are volunteer staff, and all executive officers are working without compensation.

2. Who is on the Board of Directors and what are their duties?

The current Board of Directors consists of a quorum of four people. They are listed on the Foundation web page under the “Contact Us” tab. The time commitment to the Foundation is currently an average of 20 hours per week for each individual on the Board. Each person on the Board has a specific title and duties pertaining to that title. Some individuals are covering more than one position, as the Foundation is still in its infancy, positions are volunteer, and will remain volunteer and uncompensated well into the foreseeable future.

  • Alicia Harper is the Founder, President, Blog Adminstrator and Volunteer Coordinator
  • Holly Mansfield is the Vice President, Media Specialist/Website Administrator
  • Jessica Zuchowski is the Secretary and Head of Marketing and Merchandising
  • 3. What is the purpose of the Global Hydranencephaly Foundation?

    The mission of the Global Hydranencephaly Foundation is to network families across the globe to ensure every child given the diagnosis of Hydranencephaly has the opportunity to live and thrive in the quality of life they deserve. Families will be offered support, information, guidance, and resources. Through education and awareness campaigns, the medical community will become enlightened to the possibilities that exist for these children and the world will learn to accept this condition as simply an obstacle in the lives of these little miracles.

    Our vision for the Foundation is to help families around the world to cope with the diagnosis of Hydranencephaly in their child’s life. We hope to provide grants which will be awarded for assistance with therapeutic services, equipment, medical costs, and other financial responsibilities of caring for these children. Information for adoption and designated care to insure families are not overwhelmed by the amount of involvement required in caring for these children will also be shared. Awareness campaigns and merchandise to create recognition of the cause and what this condition is will be made available. The foundation will be guided by individual family needs as it grows. The ultimate goal is to simply to insure these little lives are allowed to shine.

    4. How are decisions reached and projects planned for Global Hydranencephaly Foundation?

    The Global Hydranencephaly Foundation has a non-membership structure and is guided and operated by its Board of Directors. As written into the by-laws, a majority vote of 3 out of 4 is required to make a decision or pass a motion. Therefore, no one person has control of, or makes unilateral decisions regarding the NPO’s policies and operations.

    Projects are typically the result of suggestions, followed by discussion, in the Board of Director’s meetings. Families who are involved in the Foundation’s support group are always welcome to share ideas and suggestions for awareness campaigns, projects that would benefit membership, and marketing ideas. The Foundation is always looking for committed individuals who would like to serve on various committees as positions become available.

    We are proud to have the following individuals currently involved in committee work:

    • Volunteers include:

    • Hydran Angel Family Support includes Mellisa Higgins and Jamie Brown
    • Newsletter team includes Katie Jarebeck and Becky Knudson and Jennifer Amerding
    • Newsletter Editors are Jessica Zuchowski and Holly Mansfield
    • Newsletter Publisher is Jessica Zuchowski
    • Website Administrator is Holly Mansfield
    • Digital Birthday and Angel Day cards are done by Katie Jerabek
    • Instagram Content Manager is Rob Windels
    • Graphic Artists include Jessica Zuchowski and Katie Jarabek
    We thank these individuals from the bottom of our hearts for their dedication and willingness to serve children with Hydranencephaly and their families.

    5. What types of things are donations to the Foundation used for?

    To date, individual donations have gone to legal incorporation, filing fees, website domain purchases, awareness merchandise purchase, and various other legal and filing fees.

    To date, purchase by individuals of merchandise, like awareness bracelets, jewelry and window clings have funded the printing of awareness brochures, and the compilation of “Family Information Packets” which are currently being printed and made ready for families of newly diagnosed children. These packets will be supplied free of charge, one per family, when a new family joins the Family 2 Family Resource group. The information is also being compiled in PDF form for the Foundation website, so that our current families can print copies as needed for themselves, extended family, friends and medical professionals.

    6. What are some projects/and or upcoming campaigns I can expect my donation to help with?

    Awareness campaigns currently in planning stages include:

    • R.A.R.E. Disease Day Campaign, a National campaign by NORDS, in which our Foundation will participate in various ways – More information to come in our newsletter!
    • Participation in other local disability related conferences and fairs to further spread awareness of our children and Hydranencephaly
    • Distribution of Hydranencephaly brochures to local medical communities

    Projects for future will include:

    • Hydranencephaly conferences
    • Grants to individual families in need
    • Establishing an equipment lending library

    Many other projects are being discussed, organized and planned to grow the Foundation and help our families. Again, suggestions are very welcome!

    7. How can I help raise awareness of the Foundation?

    Request Hydranencephaly awareness brochures from the Foundation and then distribute them in your local communities!

    Participate in local disability awareness fairs and/or educational conferences. If you need a speaker or materials, contact the Foundation for help!

    Purchase and wear Hydranencephaly jewelry, bracelets and put the window clings on your vehicles and/or home window! When people ask you about them, talk about Hydranencephaly or have a brochure ready to hand out!

    Talk about the Foundation at every chance you get, especially to your medical professionals. Refer them to our website (write it down for them!) and ask them to read about our children and all that they are accomplishing!

    Volunteer!! In your community, in your school, and for the Foundation itself! We need your help to make this Foundation grow!

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