One of the greatest challenges of starting a health organization for an orphan disease that few are comfortable talking about – anal cancer, and its primary cause, HPV – is deciding where to begin. It’s especially hard when people don’t even know what the disease is.

When our mother, Paulette Crowther, passed away on April 5, 2010, we vowed that future generations of anal cancer patients would have many more options than the antiquated chemotherapy cocktail therapy offered to us. The Cisplatin + Taxotere doublet gave our beautiful and spirited Paulette just two years of extremely difficult life.  At her death bed, we swore that HPV-associated cancer would one day be a thing of the past. During her final months, and after her passing, we called nearly every researcher in the United States that receives public funding for anal cancer research. Not surprisingly, the list was short. The more we talked and networked, the more we realized the great challenge that lay ahead of us.

We knew that if this wealth of knowledge we amassed in our caregiving and desperation to save Paulette died with her, we would have missed a tremendous opportunity to do something special for others affected by the disease. We concluded that not only do we, but the world, has to resurrect an extinct therapeutic pipeline for HPV-associated cancer. We must remedy the isolation anal cancer patients feel due to the deep stigma associated with the disease, educate the clinical community on all types of anal cancer and anal pre-cancer, better understand who is at risk and what to do about it, and advocate for improvements in prevention and early detection.

Before continuing, we realized that we had to educate ourselves – scientifically, clinically, and medically. We were one of few service/advocacy cancer organizations that attended the International Papillomavirus Society’s yearly conference, this year held in the beginning of July in Montreal. It was just three months after Paulette’s death and coincided with her 54th birthday. The conference focuses on HPV, the STD that the majority of both men and women get at some point in their lives. It was an incredible opportunity to connect with a broad spectrum of the HPV community, discuss the latest research themes and findings, and determine how our involvement might be the most help to both scientists and clinicians.

We also needed to understand what it takes – more than passion, drive, knowledge, contacts and all the other essentials – to run a non-profit organization for cancer education, service, advocacy and research that is both effective and sustainable. What are the commonalities between the organizations that have had success? Where have they made mistakes? Other cancer and health non-profit groups have all been extremely generous with their time and are providing terrific guidance on set-up, execution, and follow-through.

In the coming weeks and months, we’ll continue to collect as much “data” as we can: from patients and providers to basic researchers, government agencies, and other non-profits, so that our first years will indeed be fruitful ones. We are open to your thoughts and suggestions.

The Almada Sibs