I’m home today with a fever, so if my writing is a little off, please forgive me!
While struggling to get out of bed for a cup of coffee, I saw a news segment about Maria Shriver leading an event this Sunday with prominent journalists hosting panel discussions in major cities about topics that include fitness, food, nutrition, and sleep.
The event, MOVE FOR MINDS, will bring women together to increase awareness of Alzheimer’s as a women’s disease and the need to raise research funds to find cures. Participants will be encouraged to take part in workouts that challenge them physically and spark neural activity in the brain. The event will also promote brain healthy food and lifestyles.
My daughter, like most people born with an extra chromosome, is susceptible to Alzheimer’s. For Ellen and others who have Down syndrome, Alzheimer’s tends to appear 10 to 20 years earlier when compared to the general population.
When I first held Ellen in my arms a few days after she was born, I knew she would lead an incredible life. (But don’t most parents feel that way?!)
When she was a few months old, an early education specialist visited our home. She asked me if there had been an official diagnosis. I said yes but asked why she asked. “I’ve been around a lot of children,” said Sharon. “She is so alert. There is so much going on.”
It may not have exactly been at that point, but soon after my husband and I intensified our research about Down syndrome. We learned a lot about nutrition, lifestyle, early education, physical activity. We joined a wonderful online forum for parents of children born with an extra chromosome. We met parents of teenagers who had graduated from high school.
As all parents of children who are “different” know, it can be at times a lonely path. But we have been blessed by the encouragement and knowledge of many astonishing women and men whom we call Team Ellen.
We are also lucky and grateful for Maria Shriver and others for their courage, humanity, activism and advocacy. They inspire and engage scientists, philanthropists, politicians, industry leaders, and ordinary people like my husband and me who together may accelerate finding a cure for Alzheimer’s, especially as many baby boomers will be staring it in the face or in the faces of their loved ones.
There is a lot of hope. Ellen has been following a nutritional regimen since she was six months old. My husband and I feel like it has made quite a difference. She loves nothing more than to climb walls at the YMCA! She is verbal (at times a bit too verbal) in two languages. With patience, her fine motor skills are improving. Most recently, a link in the online forum Ben and I belong to featured an article about a drug in trials that could reverse the progress of Alzheimer’s.
So what about my 5 Degrees of Separation from Maria Shriver? In my work in philanthropy, I once spoke with Sargent Shriver, Maria’s father, who was first director of the Peace Corps and former president of Special Olympics who was diagnosed with Alzheimer’s in 2003. Thank you, Maria, for looking out for women like my daughter. Because of your advocacy, you inspire me to do my part.