When my father was diagnosed with Alzheimer’s in 2005, I was stunned and in disbelief. I had no idea what to anticipate for our future as a family dealing with an unexpected new challenge and the fears that accompanied it. As the daughter of an Alzheimer’s patient I felt lost, saddened, and frustrated beyond words. I asked myself, “Where would we be if help had not come our way?” Thankfully that question was short-lived due to the support system that has been provided by the Shiley-Marcos Alzheimer’s Disease Research Center (ARDC), especially, Frances Martinez – Goodrich, MSW (social worker). This program miraculously saved my family from drowning in a whirlwind of complexities from this debilitating illness. On behalf of my family, my step-mother, Martha Moreno, and my father, Jose Manriquez, I feel empowered and blessed to share our story, while acknowledging the importance of giving support to other caregivers, Alzheimer’s patients, and the community at large.

    In 2000, initiated by Ms. Martinez-Goodrich, the ADRC held its first Hispanic Caregiver Conference for the San Diego County community. As I re-read the history of the ADRC Hispanic Caregiver Conference overview, I could feel Ms. Martinez-Goodrich’s pain and gratitude in surviving her mother’s 1989 –1994 Alzheimer’s challenge as it “took place in a remote countryside location of New Mexico, where resources were nearly obsolete.” Frances wrote that she, “felt alone and confused as to what to say or do for my mother and did the best with what I knew at the time.” The birth of the annual conference was inspired by her realization of the need to educate and support others who dealt with Alzheimer’s. “It is the product of proactive individuals cumulatively and compassionately serving their community” she stated, and what she emphasized really hit the target home for me. This idealism, historical information, and involvement of the research community connects with the conference motto “Working Together To Create Miracles.”

    I feel regardless of how, when, or where a person becomes an advocate for research, we all have a common denomination our passion for knowledge and its application. Ms. Martinez-Goodrich wanted to learn more about Alzheimer’s and joined the ADRC team in 1995, bringing with it, her passion to enlighten the Hispanic caregiving community and their families. Dr. Leon J. Thal, former Director of the ADRC, translated his passion and brilliance into the fields of Neurosciences and Alzheimer’s research. His amazing legacy and vast body of study helped transform his investigations into greater understanding of treatments for Alzheimer’s. Moreover, Dr. Doug Galasko, MD, the current co-director of the ADRC, continues to diligently strive to further advances in Alzheimer’s research. He is readily available to answer all of our questions at the annual ADRC Hispanic Caregivers Open House luncheon, while at the same time giving us updates on Alzheimer’s research. After learning so much about the difference these people make, I began to question what in turn I, as a Hispanic woman, can do to help advocate support for the ADRC. More specifically, what could be done for the Hispanic community and the Alzheimer’s research movement?

    My first step towards activism began In February, 2007 with convincing my father to consent to donate his brain to the ADRC at the time of his death. Initially he resisted because of his religious beliefs, but after careful and delicate clarification, he consented. I further explained to him that we needed to increase the Hispanic participation within the research arena and that his contribution would have an everlasting impact towards finding a cure for Alzheimer’s. My involvement has taken on many forms in an effort to increase awareness. It began with a photo of my father, Martha, and I depicted on a flyer aimed at creating awareness of the ADRC’s outreach program to the public. Then in August 2007, I gave a presentation at the eighth annual Hispanic conference where I encouraged caregivers and their families to take care of autopsy consent forms and the advanced medical directives paperwork. My father, Martha, and I carry the autopsy consent card with us at all times. It has my fathers’ signature, a brief consensual acknowledgement of the autopsy, and two important phone numbers to call upon his transition.

    It is best to embrace and prepare for this hardship rather than to ignore and delay the inevitable. I cannot emphasize enough, to every family, the importance of educating yourselves and learning how to prepare for a difficult and delicate medical challenge.  I hope my words will support and guide every reader to overcome the uncertainties and embrace further education by becoming proactive and supporting this movement.