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The Journey Begins…

28 Feb

In October 2012, someone very special asked me what my legacy would be and whether I’d ever considered a foundation to address the disease with which I’d been diagnosed one decade prior.  My initial thoughts were that upon seeing my face or hearing my name, most people would think very little of a foundation bearing my moniker or displaying my visage.  Almost immediately thereafter, though, the framework for The Asha Foundation for MS became apparent; and the relative anonymity I bring to this venture is key to the vision and mission of the foundation.

You see, I am only one of about 400,000 individuals diagnosed and living with MS in the US, and one of fewer than 100,000 African Americans.  In many ways, I am just like everyone else dealing with the uncertainty and unpredictability of this disease.  In the decade since being diagnosed, I’ve had the opportunity to witness how little attention is given to the role of race/ethnicity, socioeconomic status, and social/cultural differences when programming and services are offered for those living with and affected by MS.

Could it be, then, that the legacy I leave behind would be an organization designed to address these factors—to bridge the gap?  YES!

What is The Asha Foundation for MS?

In a nutshell, this foundation is the culmination of all the questions, as well as all the wishes and hopes I’ve had for the past decade-plus that I’ve lived with this diagnosis:

  1. I’ve been curious about whether or not there are differences in genetic makeup, which lead one to have greater susceptibility to developing MS.
  2. I’ve wondered if my own previous diagnoses with different autoimmune diseases left me more inclined to develop MS.
  3. I’ve been challenged by the notion that African Americans develop MS less frequently, but often with greater disease progression and severity than Caucasian Americans.
  4. I’ve wondered if a diagnosis of MS leads to treatment of only that disease and its myriad symptoms, at the expense of looking at how treating the whole individual may yield greater rewards.
  5. I’ve been challenged by how expensive it is to live with this disease, and how few resources are available to help navigate all of life’s challenges associated with being diagnosed during one’s prime earning years.
  6. I’ve wondered if I’ll be able to age-in-place, as finding housing that is both affordable and accessible is quite challenging, particularly for those who have not reached retirement age.
  7. I’ve wondered what life would be like if I could get information on all of these matters in one location, and if those who provided the information understood what it’s like to have to run from place to place, often getting nowhere fast, or becoming exhausted before getting all that we need.

So, each of these points was the impetus for beginning The Asha Foundation for MS, and our goal is to be able to serve you in each of these areas.

The foundation’s principle business initiatives involve identifying and funding research investigations into the multiple ways in which the impact of MS differs in the black community in the US and the broader diaspora.  The Asha Foundation for MS is also working to provide products and services targeting the social and cultural needs and values of those in the target community.

Our future plans involve creating programs and services to address factors unique to the African American MS community—such as higher incidence of co-morbid health concerns like obesity, hypertension, diabetes, kidney disease, stroke risk, etc.—in an effort to promote greater health and wellness outcomes for overall well-being.

Additional plans for the future include establishing living communities of affordable, accessible housing for those with MS, where they can have access to programs and services, while also maintaining the ability to live independently for as long as possible.  These living communities would be owned by and operated by The Asha Foundation for MS, but rented, leased, or sold to individuals and/or families who qualify for this program.

So, what can you do to help The Asha Foundation for MS?  First, get involved.  Sign up for updates, and get your friends and family to sign up, too.  We want to become one of the first organizations you think of when you hear the words “multiple sclerosis,” and we want to become the premiere place to which you turn for products and services to help make living with MS easier for everyone concerned.

Second, you can share your stories, your needs, and your questions with The Asha Foundation for MS, and help us shape our outreach to those communities who need us most.  And, when you see programs and services that are of interest, register for them, evaluate them, and help us to continue to improve in everything we do.

Finally, you can make a donation (here) to the work we’re undertaking.  Your donations will ensure that we are able to keep meeting our programs and services agenda to address the needs of those living with or affected by MS.

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Posted by on 28 February 2013 in Uncategorized

 

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