Mission
The Mission of Mast Cell Hope, Inc. is to advance research to find new treatments and ultimately cures for Mast Cell Diseases and to educate care providers on treating Mast Cell Disease. We will advance frontline research into exploration of new ideas underlying the root cause of mast cell diseases. Our goal is to help patients by encouraging physicians, nurses and staff to understand Mast Cell Diseases, and to support researchers in identifying new treatment modalities.
Ruling year
2019
President
Bonnie Sica
Main address
73 Huckleberry Lane
Southington, CT 06489 USA
EIN
83-4544114
NTEE code
Fund Raising and/or Fund Distribution (G12)
IRS filing requirement
This organization is required to file an IRS Form 990-N.
Programs and results
What we aim to solve
Since we are just starting up the biggest issue is fundraising. We received a capacity building grant from Global Genes. This grant has helped us grow into a strong and active non profit. We are looking for donations and more grant opportunities to continue to achieve our mission.
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
Genome Study of Mast Cell patients and families.
This is a double blind study that will run a deep dive genome sequencing on patients with Systemic or Cutaneous Mastocytosis and Monoclonal or Idiopathic Mast Cell Activation Syndrome. It is our goal to identify a common genetic cause to these disease and to help find new treatment and cures with this information.
Education of Medical Professionals
We are building continuing education credits for physicians, nurses and other medical professionals. Our goal is to train medical professionals in all types of Mast Cell diseases to improve patient outcomes in the Emergency Department, Doctors office and Hospitals.
Where we work
External reviews
Our Sustainable Development Goals
Learn more about Sustainable Development Goals.
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
We are now working internationally and are currently supporting physicians and researchers creating new testing and treatments for mast cell diseases. We will be building our physician, pharmacist, nurse and respiratory therapist continuing education credit program. We are offering patient inspiration to our community and helping patients who need support. Also, we continue to work towards using the genome study of mast cell patients to find FDA approved medications that may work for mast cell patients as well.
What are the organization's key strategies for making this happen?
We have built a full fundraising software package and will be reaching out to patients, caregivers, families, physicians, and pharma to fund our kick off genome project.
We have worked very hard to be extremely wise with our spending and can run our entire organization on only a few thousand dollars a year.
We have created our own stuffed toy named Max the mast cell for our pediatric patients and some of our young at heart adult patients. We have created T-shirts and expanded our branding and outreach to raise awareness.
We continue to build meaningful connections with other mast cell disease organizations around the world. These relationships build a stronger community and help us to use our resources and connections to move research faster.
What are the organization's capabilities for doing this?
Our capabilities are complete. We have talented nurses, Phd's and physicians willing to help make our goal a reality. We have business professionals who help keep us organized and fiscal responsible and frugal.
What have they accomplished so far and what's next?
Looking back on our first year is amazing. We recieved our first grant, built international relationships. Mast Cell Hope feels like a household name in the mast cell community and not the new kid on the block. We have three research initiative working. We are attending three professional conferences this year and hope to continue to make connections with biotech and pharma. The sky is the limit!
We look forward to fundraising to support our research projects and our Education initiatives in the form of continuing education credits for physicians.
We are welcoming and transparent. mastcellhope.org
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
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Connect with nonprofit leaders
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MAST CELL HOPE INC
Board of directorsas of 2/25/2021
Bonnie Sica
Mast Cell Hope Inc
Term: 2019 - 2022
Kathryn Pagano
Mast Cell Hope Inc
Marilyn Huntley, RN
Mast Cell Hope Inc
Dr. Anthony Ciardella
MEDVIP, John Dempsey Hospital (UCONN), Mast Cell Hope
Organizational demographics
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Leadership
The organization's leader identifies as:
Race & ethnicity
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Gender identity
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Sexual orientation
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Disability
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