Creating a nonprofit helped me find my passion and purpose
How I'm supporting other blood disorder patients through Brandi's Blessings
I spent countless days at the hospital after being diagnosed with aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH), and during that time, my family and I formed a beautiful bond with my social worker. She was always so kind and passionate, and took action to help me during a trying time.
One day, her face was filled with frustration. She had tried reaching out to various nonprofits on my behalf, but said none of them were able to help me, as they were all focused on cancer patients. But instead of feeling frustrated, I thought about how I could fill the gap and provide help and awareness for blood disorder patients.
My mind rambled as I questioned what I could do, and whether I could truly help others. Although I was nervous, I kept reminding myself, “If I can handle these chronic illnesses, then I can handle anything.” With that in mind, I settled on the idea of creating my own nonprofit that catered to blood disorder patients.
As I sat in a hospital bed and spent nights in the emergency room, I worked to form my nonprofit. I had no clue what I was doing at first, but after Googling and asking for advice, I slowly began to figure it out.
What drove me was my illness, the bruises on my arms from being poked and prodded so many times. Because my blood disorders were rare, there was little research or understanding. As I fought my fight, I realized I wanted to help people beyond myself.
I had found my purpose and my passion.
Fulfilling my mission
In 2013, I established Brandi’s Blessings, an official 501(c)(3) organization with a great purpose to fulfill. The name comes from wanting to be a blessing to the many patients who would come after me and have many of the same questions my family and I once did.
Over the years, Brandi’s Blessings has partnered with many organizations to help those with blood disorders. I’m especially proud to have worked with NMDP, formerly known as the National Marrow Donor Program and Be the Match, which aims to save lives through transplant. After my diagnoses, I was told to consider a bone marrow transplant; however, there weren’t many minority donors on the registry. This mattered because you’re more likely to find a match from a donor of the same race, as the NMDP website notes. Partnering with this organization enabled me to work toward increasing diversity among bone marrow donors.
Through Brandi’s Blessings, I’ve also formed a vital partnership with the American Red Cross, which collects blood and platelets for those in need. We have hosted countless drives, as these donations are essential. I have firsthand knowledge of their impact, as blood donations have saved my life.
My nonprofit is also focused on educating and supporting patients, as there is a general lack of understanding about blood disorders and the patient experience. To change this, we must speak up and share our stories to spread awareness.
Being an entrepreneur has come with many ups, downs, and “figure it out as you go” moments, but I’m proud of all I’ve accomplished. As of today, Brandi’s Blessings has hosted many bone marrow, blood, and platelet drives; connected countless patients, social workers, hospitals, and organizations; and provided families with financial support as a loved one fights for their life.
Through my mission, partnerships, and passion, I’ve been able to give back and help others, much as that social worker worked to help me many years ago.
I challenge you to get involved in the PNH world in whatever way you feel comfortable. It takes all of us to make a difference and get the word out. So, I ask, how can you spread awareness?
Note: PNH News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of PNH News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to paroxysmal nocturnal hemoglobinuria.
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