Happy New Year HypoPARA Warriors!
We are excited to jump right in to 2022 with all of you and support our community. This year has brought reflection and refocus for us as a Board. We took time to recognize everyone’s strengths and passions to move our seats around and introduce the structure of the board for 2022.
In previous years we have had an executive board however, we have removed that and will be led by
Bob Sanders: President
Patty Keating: Chairman
Michele Rayes: Vice Chairman/Treasurer (temporary)
Loretta Gulley: Secretary
Bari Vapnek: Director of Communications
Deb Murphy: Director of Research and Studies
During the 2021 year we had some key accomplishments:
- By laws were reviewed and updated
- New board Voted in
- Successful Virtual Conference
- Presented to the FDA
- Strengthened relationships with resources to support our community
- Attended Endo and ASBMR
- Hosted webinars
- Hosted Fundraiser
2022 Goals-In progress to work on during 2022
- Rare-X Registry has begun! This is being led by Deb Murphy…more soon!
- Medical Advisory board is formed and will meet 1st Qtr to determine their goals
- PFDD meeting
- Print materials for medical offices
- Membership drive and fundraising events
- Hopeful for a Hybrid Conference 2022 with Thyca in Nov-Date TBD
- Host a booth at ASBMR 2022
Additional and exciting to share is, we have entered Phase 3 of the TransCon trial and things are going well. We are hoping that is promising for the future. Amolyt and Calcilytix are in Phase 2 of their trials which gives us even more hope for specific types of HypoPARA they are studying. We have no date for the return of Natpara but will keep the community informed as they share with us.
While we communicate with these pharma’s regularly and share what we can, we encourage you to scroll around their sites as well for updates and to learn all you can. I hope you feel the HOPE in all these pharma’s taking on clinical trials for HypoPARA. There is HOPE with us getting to speak to the FDA and doing a PFDD.
As an association we are growing and taking on projects that require more hands-on deck to support. We will be adding 1 more person to our Board of Directors in the Treasurer role. If you have experience in accounting, bookkeeping, nonprofits and are willing to volunteer a little time each week (maybe 1-2 hours) we would love to speak with you. Please send us your resume to firstname.lastname@example.org
We are also looking for committee members. Specifically, we need help with website, marketing, fundraising. If you enjoy being creative and like to have fun fundraising, we would love to hear from you. This is a volunteer committee member role. This role will also help support our initiative of getting print material to the medical offices. Please send your resume to email@example.com.
Lastly, in general if you have a specific skill that you would like to support our community, we would love to hear from you. Please email your resume and thoughts to firstname.lastname@example.org. As always, our board and association are all volunteer positions.
We look forward to serving you as a community! Please make sure to join our social networks facebook, Instagram, twitter and linkedin pages. You are welcome to just scroll around and see what others are talking about. Share if you like or just scroll around…up to you!
We also have our website at hypopara.org.
Check us out and we wish you great health and prosperity in 2022!