Spring has Sprung

 

Beautiful weather and busy times are here! Today I am partaking in my pre-infusion Gatorade ritual, while trying to finish up some last minute work, and wait for it…I have to pack another suitcase!

Another suitcase? Yes. Over the past couple of weeks I have packed, unpacked, done laundry and repeated – I’m on my third round of packing now.

With Pompe Peep Kerri in Atlanta.

At the end of April I was invited to speak at a patient meeting in Atlanta, Georgia. It was a “Ladies Luncheon” hosted by Genzyme. Female patients of all ages and with different chronic conditions were in attendance. There were even two other Pompe patients there – which is always a special treat for me. I shared my story, or my “diagnostic odyssey” and related how I find the strength to fight through each day. I answered some questions, and I’m told – gave them hope and inspiration. That in turn, gives me the motivation to keep doing what I’m doing: fighting this blasted disease every single day and taking every opportunity to spread awareness and embrace the role of Patient Advocate!.

Hanging out in the Presidential Suite of our hotel with Genzyme’s Kathleen Coolidge.

After returning from Atlanta, I had two days to repack and head to Washington DC. Genzyme and MassBio invited me to speak to Massachusetts Congressional leaders – ok, their staff members, but still very cool! Me up on Capitol Hill and people listening to what I had to say – I could get used to that! Again, I relayed my story but focused on how my life has greatly improved because of biotechnology. Later that evening we attended a reception and the actual Congressmen attended and spoke about the future of biotechnology in Massachusetts. It was great, I met so many interesting people and had the best time. I was truly in my element!

With the help of some amazing women (thank you Trinity and Hillary), we have organized a fundraiser for our Pompe friends Allyson and Brad. The short version is that Allyson from New Zealand and Brad from Australia are participating in a clinical trial at the University of Florida. This is currently the only way either of them can get treatment for Pompe – you can read the long version HERE. They have to relocate to Florida from halfway around the world for 6 months! This can get pretty expensive, very quickly. My friend Trinity offered to help with a fundraiser because every little bit helps – and because she is awesome! We’ll be launching a Scentsy (lovely smelly-good stuff) fundraiser June 1 and it will run through the end of the month. 20% of the pre-tax funds raised will be donated to Allyson and Brad. I will post all the details about the fundraiser in about two weeks – so please be prepared to open your hearts and your wallets for our brave Pompe peeps from the southern hemisphere! Please DO NOT purchase anything yet because in order to contribute specifically to our fundraiser you have to go through a designated link – which I will post at the end of this month. But do please spread the word that we will be holding a fundraiser – your help and support is greatly appreciated.

And now for the suitcase that sits across the room, taunting me to fill it up again….I will be leaving in a few days for a wonderful two-week adventure! I’m sailing with friends on the Disney Magic to Barcelona, Spain.

Bon Voyage!

2 comments

  1. Hi Monique! I hope your Disney vacation is fabulous! I have a Pompe question for you and other folks with Pompe disease….What cholesterol medicine are folks with this disease able to take without severe side effects?..I was diagnosed with Pompe in March of 2010…Of course, I had symptoms which I now know were those of Pompe for the past 10 years…during the “undiagnosed” period, I was extremely sensitive to both Zocor and Zetia…most doctors do not know alot about it, thus knowing which new cholesterol med to use is a mystery…Thank you for any information/help you can give. Sincerley, and Take care! – Katie

    1. Hi Katie! I don’t take any cholesterol medications so I will have to throw this to the rest of the Pompe community. I will ask around and see if anyone has any information. I have a patient meeting tomorrow evening so it is kind of perfect timing.

      Monique

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