An Open Letter to Mark Zuckerberg


Dear Mr. Zuckerberg,

I am not a greedy person. So I will not ask you for billions of dollars.

What I am is a fierce and passionate advocate for the more than 500,000 New York City residents affected by a dementia diagnosis. So, as you and your wife consider your philanthropic options, please consider the following: in less than 30 years, as many as 16 million Americans will either have Alzheimer's or be taking care of someone who does.

Today, every 67 seconds an American develops Alzheimer's, the only cause of death among the top ten in the United States that cannot be prevented, cured or even slowed. However, in the absence of an effective therapy, we have strong clinical evidence that the best treatment is good care. Investments in care, support and education mean vast improvements in the quality of life not only for the people who are ill, but for the entire community.

Let me give you some examples.

People with dementia will wander. Experts say that close to 50% of wanderers who are not found within 24 hours may never be found. Instead, they will suffer serious injury or die. On the other hand, with New York City's Wanderers' Safety Program, 99% of those who wander are returned home safely. And when NYPD officers on the beat are not looking for a person with Alzheimer's, they can focus on the critical security issues we face today. Everybody wins for a mere $55 per registration.

Research shows that family members who provide care to those with chronic or disabling conditions, like Alzheimer's, are at risk themselves for emotional, mental, and physical health problems. Resources for respite care are not a luxury. They are a priority to ensure that family caregivers take care of themselves. That means time to go to the doctor and time to rest, all the while knowing that the family member with dementia is safe in the hands of a trained professional. You can provide one day of respite for an exhausted caregiver for only $150.

Our free caregiver support groups provide a veritable lifeline for those struggling to deal with a loved one's Alzheimer's diagnosis. In New York City, the volunteers who lead these groups are among the most compassionate and dedicated in the world. With an investment of $50,000, we can provide these dedicated community volunteers with ongoing support and training, so this program can grow along with the numbers of those who need it.

At our state-of-the-art Harry and Jeannette Weinberg Early Stage Center, we provide a safe, supportive environment and specialized programs for the growing number of people under the age of 65 diagnosed with early onset dementia. Keeping pace with the growing demand for these important programs is not cheap. $250,000 will keep the center up at running, at capacity, for one year. Double that and we might be able to keep pace with numbers of families asking us to help.

Alzheimer's is an equal opportunity disease, affecting families from every cultural background. Ensuring that resources are available in many languages is a priority, not only in NYC, but throughout the country. Hiring outreach specialists who speak a foreign language is critical to ensure that life-saving information is available for the Russian, Chinese, Orthodox Jewish, Latino, and African America communities - where cultural and other barriers often prevent community members from seeking help.

Let's not forget that the need for trained home and institutional health care aides has grown exponentially and we are not expecting any reduction in demand. An investment of $1,000 in our dementia care training program will not only help provide a decent job for an aide, but it will also ensure good care, for a person living with dementia.

And finally, who can a caregiver call when a family member gets lost in the same community where she has lived for a lifetime? Who can help a family member who is frantic with worry and exhausted? An investment of $50,000 will fund the annual salary of one Helpline specialist who works to provide our New York City's Alzheimer's community with life-saving crisis counseling 24 hours a day, seven days a week, 365 days a year.

We all live in hope for a world without Alzheimer's. But until that day comes, the most important thing we can do is to provide support, care and education for the people who are in the trenches every day.

And with your help, Mr. Zuckerberg, until an effective therapy is found, families affected by a dementia diagnosis will have the tools they need to survive. Given the demographic trend, I cannot imagine another issue that would provide the same impact for every dollar of your investment.

Sincerely,

Lou-Ellen Barkan
President & CEO
Alzheimer's Disease and Related Disorders, New York City, Inc.

Source: Huffington Post.