Month: May 2011

Fundraiser! Imagine That!


Imagine you have a life threatening illness for which there is no cure – only a treatment. Now imagine that the treatment is only available half a world away and you would have to leave your family behind for 6 months in order to receive this treatment. Imagine the emotional and financial burden this would put on you and your family. For Brad from Australia and Allyson from New Zealand, they don’t have to imagine it – they are living it. Read more about Brad and Allyson’s journey to America HERE. While there is little we can do as a community to ease their emotional burden, we can band together and try to alleviate some of the financial burden.

My dear friend Trinity has graciously volunteered to host a Scentsy fundraiser for Brad and Allyson. 20% of the sales will be donated to Brad and Allyson directly to help them with their day to day needs. Every little bit helps in a situation like this.

The fundraiser will run the entire month of June. Orders can be shipped to addresses in The USA, Canada, The UK, and Germany only. Scentsy offers great products that smell so wonderfully good – and they make great gifts!

Wouldn't this look lovely in your home?Simply visit Trinity’s Scentsy page HERE and click on “My Open Parties” and select “Fundraiser for Pompe Peeps/Brad & Allyson.“ VERY IMPORTANT: You MUST click on the correct “party” link in order for the funds to be earmarked for Brad and Allyson – changes cannot be made once the order is placed.

Alternatively, here is a direct LINK to the fundraising page for Brad and Allyson.

Please forward this fundraising information to everyone you know – because every little bit really does help.

Imagine what we can do when we all stick together. Now go shopping for some lovely smelly good things, and imagine how wonderful your home will smell for a good cause!

Thank you, one and all.

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!