My recent trip to the USA had 3 main objectives:
1. Meet with the top experts in the world and find out what they think we should be doing in our MND/ALS journey
2. Meet with the team from ALS Worldwide who have been so supportive
3. Go on a road trip of the United States of America with my team of girls
Once the objectives that we set for ourselves in March had been agreed, the logistics for our trip and travel details were impeccably thought out, planned and arranged by Paula. We arrived in Boston USA after a mammoth 30 hour trip with our girls, the occasional 2 yr old meltdown, to settle in for some much needed sleep. Stephen and Barbara Byer from ALS Worldwide welcomed us at the hotel and immediately made us feel at home. They lost their son Ben to MND 10 yrs ago and it was comforting for us to spend 2 days with people who understood, in detail, the impact the disease has on just about every aspect of daily life. Boston is a wonderful city and our first impression of America and Americans was a good one.
The most important leg of our trip was to meet with Prof. Merit Kudowitz, head of neurology at Harvard. Massachussetts General Hospital which employs over 20 thousand people, is the research hospital for Harvard, and this is where we met with Dr Kudowitz and her team. After the first 5 min, we knew that we were with the top minds in the world, and the detail in which they investigated our case was further proof that we would leave Boston with a clearer picture of what we were dealing with and how to best go about combatting it. Dr Kudowitz runs trials for the USA Food & Drug Administrator (FDA). We found that this made her extremely objective in her advice and that her information pertaining to new drugs, methods and trials was accurate, un-biased and first hand which was fantastic.
Prof Kudowitz covered every alternative to ALS which included a 3 hr consult with Dr Felsenstein (head of infectious diseases at MGH), and the diagnosis was expectedly ALS. We are waiting for a few test results to come back, but the most exciting part of the trip was
1. A list of existing “on the market” drugs for similar conditions which the neurology team believe can help my symptoms.
2. A list of upcoming ALS trials which we have been following. The one which we believe shows the most promise is a stem cell procedure by Neuralstem and involves surgery on 2 areas of your spine.
We are sincerely grateful for all the people and forces that conspired to make this meeting possible for us. It was certainly the right medicine to kickstart our Road Trip through the USA.
After a 13hr (delayed) train ride from Boston to Washington DC, we were incredibly excited to see old friends Max “Vundu” Nightingale and Marius “Biscuit” Malherbe. The following 2 days were spent exploring the capital with our old friends and their families. We collected our R.V. (Camper Van) in DC and headed South. We stayed in RV parks in Charlottesville, Asheville, Fancy Gap then Nashville Tennessee for 3 nights with friends James and Lexi Armstrong. We had planned to see another old friend Wesley Uys, but our time in Nashville coincided with the birth of his son Elijah. After an enjoyable 3 days in Nashville where we were looked after like royalty, we continued our roadie via Natchez State National Park and Sam Houston State National Park on the way to our final destination Houston.
We arrived in Houston, dropped off our “camper” and met up with dear friends Kitty and Lex Hochner and their 2 boys Owen and Lee. We had shared a “digs” 10 years earlier and it was a very special time spent all together. The Hochners opened their home to us and could not have made us feel more welcome.
Our trip to the USA was hugely positive and we made some special memories. I am now surprisingly endeared to the Americans and found them to be polite, sincere and very helpful. I look forward to going back some day soon.
In parting, please note that…
MAY IS ALS AWARENESS MONTH! Even with the incredible success of last year’s Ice Bucket Challenge, it is critically important that no one loses sight of the cruel reality of this devastating disease. Tremendous work remains to be done to address the unmet medical needs of the estimated half a million people living with ALS/MND worldwide.