Advocacy

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There are three known genetic mutations that guarantee the onset of Alzheimer’s disease. Jen’s mother, Darlene, inherited the APP gene mutation from her mother. That single mutation—amongst millions—claimed Darlene’s life at age 55. Alzheimer’s took a huge toll on their family, in part because the disease lacked a meaningful treatment or cure. Then an opportunity arose: Researchers were seeking families with these mutations, like Jen’s, to become subjects in the worldwide Dominantly Inherited Alzheimer’s Network’s (DIAN) Study.

Boston became Jen’s DIAN Observation site in 2012. Later, in 2015, Jen joined a planning committee to create the first DIAD Family Conference, a conference tailored to families—like hers—struggling with fears of inheriting the gene—or worse yet— passing the gene along to their children. The conference boldly mingled legislators, researchers and pharmaceutical companies with the families affected by inheritable early-onset Alzheimer’s in an effort to offer support and spread ideas.

One of Jen’s roles on the DIAD planning committee is fundraising. In 2015, for the inaugural meeting in Washington DC, this minute-long video was created:

Now, with conferences set for Toronto, Canada this July 2016, and London, UK in 2017, fundraising is more important than ever. Money shouldn’t be the factor that prevents families from attending these important conferences.

Painting for Memories is a fundraiser for the DIAD Family Conference. To join, contact Jen at jenromnes@icloud.com . If you are unable to attend the paint nights but wish to contribute,  a tax deductable donation (for US citizens) can be made through this link:  DIAD FAMILY CONFERENCE

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