That’s the title of Harmony resident Ira Porterfield’s latest and (in my biased eye) best poem submitted to STROLL, our local monthly magazine.

 

It came about, along with a nice donation, as a response to my latest “ask” of Harmony friends to support my daughter’s MS Walk team she named Brooke’s Believers. This team has been walking every May for 15 years now to help raise funds for research to find better disease modifiers for persons living with Multiple Sclerosis, and some day, the cure for this crummy disease.

 

In May of 2020, thanks to COVID, our little team of about 10 diehards was the only one to show up, but we did the walk any way.

 

With the help of Harmony friends, who donated a total of $6,000 this year, Brooke’s Believers raised $26,143 bringing our 15-year total to an incredible $340,000. The MS Walk around Lake Windsor on May 11 saw 600 participants raise a total of $127,000. Nationally, 135,000 people participate in Walk MS and raise about 24 million dollars.

 

These funds help support the research that has produced an increase in disease modifiers that totaled only 3 when Brooke heard those words, “You Have MS”, on her 35th birthday 15 years ago, to a grand total of 24 medications to now choose from. Now a newly diagnosed person can choose from self-injections, an IV infusion, or even one of three different pill forms.

 

Brooke is on her 4th medication due to side effects, needle fatigue and insurance issues. Her latest is a four-hour long infusion she receives every 6 months. It is a monoclonal antibody (MAB) that selectively binds to a molecule (CD20) on the surface of some of her immune cells called B cells. By doing so, it removes them from circulating in the blood and thus decreasing their role in damage to the brain and spinal cord caused by MS.

 

But it comes with side effects; for Brooke it produces a drop in her immunoglobulin levels which often necessitates an IV infusion of immunoglobulin before her doctor will risk a further suppression of her immune system from her disease modifier. Her main med costs $35,000 each time, with an additional cost of $8,000 for the immunoglobulins. As long as Brooke can work, her insurance covers most of the cost. But if her disease were to progress to the point that working was out of the question, as it has for so many, these meds would also be out of the question. So, we need to keep working to find other options.

 

Some of these newer medications, including Brooke’s, that are called MABs , are also very important in various forms to fight other autoimmune diseases like psoriasis, ulcerative colitis and rheumatoid arthritis. You see them advertised on TV all the time and the generic names almost always end in …mab. Donations to support MS research also, indirectly, benefits those living with other autoimmune diseases.

 

I find it interesting, but depressing, that three of our long-time donors, with us since day one, have subsequently been diagnosed with MS themselves, or a member of their family has. Their donations prior to their diagnosis already are helping them because of the progress and research they helped fund.

 

But not all victims are as lucky as Brooke, who golfs at Harmony with me every Sunday weather permitting; and with some of you.

 

Two of her MS family of friends have passed away from the disease since she met them. One young woman living near here was diagnosed the same year as Brooke and has been wheel chair confined for over 10 years. We still have a long way to go and can use all the help we can get.

 

At first, my initial thought at diagnosis was where to build the wheel chair ramp because when I was practicing medicine all we had was IV cortisone to shorten the relapse time and hopefully decrease the amount of damage each attack would cause.

 

And when Brooke asked me if I would do Walk MS with her and help raise donations for the cause, I was very hesitant to ask friends for money. But as Brooke tells me, “It is way harder to live with MS, than to ask for donations”.

 

So, I do ask, and thanks to all of you readers who have helped Brooke’s Believers, we are in the top 50 fundraising Walk MS teams in the country most years.

 

What a great neighborhood we live in!