Purple Rain

I never meant to cause you any sorrow
I never meant to cause you any pain
I only wanted to one time to see you laughing
I only wanted to see you
Laughing in the purple rain

Purple rain, purple rain
Purple rain, purple rain
Purple rain, purple rain
I only wanted to see you
Bathing in the purple rain

Purple Rain by Prince and the Revolution 

This week I realized that I can’t sing in the car anymore. ūüėď When driving alone, or even with my husband or son, I loved to sing along when a song like Purple Rain, or anything by U2 or Elton John or Bruce Springsteen or many of the songs on Sirius Classic Vinyl, Classic Rewind, or Bridge that Stan and I both enjoy came on, and even some of Andy’s POP favorites. I can mouth the words and sing in my head and tap my feet and hands, but gone is the joy of belting out a song from my memory bank.

For over a week I have been mouthing the Pledge of Allegiance at work. There are usually kids in the office getting late slips and they do look around at the adults to see if they are participating.

We got an email from Jennifer McErlain, Development Manager, ALS Therapy Development Institute (ALS TDI) on Thursday inviting us to two ALS fundraisers on short notice. The first was Corey’s Crusade in the Purple Rain on Saturday at the Claremont Country Club in Oakland. We were able to make arrangements for Andy to stay with my dad and step mom and got a hotel reservation. The invitation said please wear purple. I had purple in my closet but had to get Stan outfitted at Macy’s Saturday morning. Oakland is about a 4 hour drive from Reno and I was singing in my head the whole way.

There was a beautiful sunset over San Francisco from our hotel
The beautiful Claremont Country Club
Purple luminarias on the entrance steps

Corey Reich got ALS at age 21. He is now 30. From the invitation, Corey’s Crusade Update: “He is in a wheelchair, but he is still talking, eating, drinking, coaching the Piedmont High School tennis teams, doing Pilates, traveling, and attending many Oakland A’s baseball games. He is still his positive, funny (or so he thinks), normal self. His positive outlook and ability to never complain is amazing.

For those who haven’t seen Corey in a while, he has progressed. But his quality of life is still relatively high. We’re hoping to find something to slow and stop the progression of ALS before that is no longer the case.

We continue to work with the ALS Therapy Development Institute to defeat ALS. We’re excited to announce that ALS TDI completed manufacturing the drug AT- 1501 (also known as anti CD-40L) and is ready to take into drug trials once the funding is available. ALS TDI also completed enrollment of 300 patients in its Precision Medicine Program and launched a second phase to enroll hundreds of additional patients.”

Corey with his mother, sister, and father listening to Dr. Steve Perrin speak

The Reich family were all incredibly kind and friendly, thanking us for driving all the way from Reno.

At the bottom of Jennifer’s email was a link to ALS TDI’S Precision Medicine Program, where they enroll ALS patients and collect data to be able to tailor medicines to precisely help each person’s unique manifestation of ALS. The disease is so variable in where it starts, what age it starts, and how fast it progresses. I enrolled in the program and I answered the first of many questionnaires and recorded my voice saying, “I owe you a yo yo today” 5 times. I will be able to record it once a month, although even my first recording was pretty garbled. I will also send blood samples to ALS TDI, and get wrist and ankle movement monitors to assess my disease progression.

At the Purple Rain party we met Jennifer McErlain, who introduced us to Dr Steve Perrin, the CEO of ALS TDI. We were able to talk with him during cocktails and then sat with him during dinner. He was a wealth of knowledge about ALS and very interesting and personable.Some of the interesting things he said about this incredibly variable disease include:

  • ALS patients are often smart people with Type A personalities 
  • A handful of baseball players and 38 NFL players have gotten ALS, but  no NBA or NHL.
  • Many patients were triathletes.
  • Military records show that combat pilots have higher rates of ALS than non combat pilots, all the way back to World War Two.
Stan and I laughing in the Purple Rain

This fundraiser was about connections and hope. Next weekend we will go to the ALS TDI annual fundraiser in Boston. It is nice that we now know some people who will be there – the whole Reich family and Jennifer and Steve. Sarah Coglianese will be there too, although she wasn’t at the Purple Rain party due to illness. The Boston fundraiser will be about love, connection, and hope because we will stay with my aunt and uncle and spend time with my cousin and her husband and baby, and we will visit my godmother and be able to share love and hugs.

We did add love and more connection to our Oakland overnight by meeting our very good friends Erika and Paul Peters for lunch in Roseville on the way home.

And here’s a Facebook memory I shared last week:

Three years ago I grabbed the moon. Go Cubs! Beat LA!

And they did it! My favorite team from childhood is in the World Series! Go Cubs! Beat Cleveland!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s