A message from Julie Breneiser, BCCNS Alliance President
Dear BCCNS Alliance Community,
The strides we have made this year are tremendous and provide further optimism for the future. One of the most important lessons of 2018 is the critical nature of data, i.e. who has BCCNS/Gorlin Syndrome. This data (the knowledge that you are out there!) is like a big mallet that hammers away and breaks down barriers to better treatments and someday, a cure. It is essential that you go to our web site and contact us to added to the BCCNS Alliance database for yourself or a loved one. This information will be kept private and result in you receiving up-to-date information and support on BCCNS/Gorlin Syndrome, and on-going research.
Another wonderful fact from this year is that grassroots fundraising works! Those who chose on their own to raise funds in 2018 brought in over $15,000.00 to the Alliance! THANK YOU! If you would like suggestions on doing this in the future, do not hesitate to contact the office or come up with imaginative methods on your own. Your dollars truly make a difference in the lives of those of us with BCCNS/Gorlin syndrome.
We have lots to look forward to in 2019. The PellePharm clinical trial of the topical agent, patidegib, will begin. If interested in participating, please share your information on the link above. The needs of the BCCNS community will be further assessed so that we can do everything possible to continue improve the quality of lives of our members. We will host a National Conference in Philadelphia (more information to come) where members will be given time to be together to learn from one and other, as well as learn about BCCNS treatments and research from internationally recognized physicians.
On behalf of the entire Board of Directors of the BCCNS Alliance, I wish you a Happy and Healthy New Year.