MJFF – Page 2 – Trekking Upward

Just one year ago I was in Tanzania, Africa with a team of nine individuals who were destined to climb Mt. Kilimanjaro for the Michael J Fox Foundation for Parkinson’s Disease Research. I think about my climb almost every day of my life. My reflections vary from day to day. Sometimes I think about the beauty of the natural features in the four climate zones we had to trek through. The scrubby brush of the moorland was speckled with beautiful flowers and fun rock formations. Even in the desolation of the alpine desert and arctic zones there was great beauty. The sunrise at over 18,000 ft. was spectacular! The view of the world below from 19,341 ft. was breathtaking. The flowers and vegetation particularly around the oases were very pretty. The rain forest with it’s dense greenery and moss hanging from the limbs and the black and white colobus monkeys were unusual and fun. The clarity of the stars at night was awesome and made me feel small yet very connected to the universe at the same time. The feeling of reaching the summit at 19,341 ft. was overwhelming and exhilerating. I felt like I had been awarded an Olympic gold medal. But at other times I reflect on how arduous the week of camping in small tents, using primitive toileting equipment, sleeping on a thin pad and dealing with the ever present dust was. Hiking in thin air was very taxing and on summit night it was freezing cold. Sometimes, I relive how difficult it was to breathe while climbing steep grades covered in scree.

But, I feel the part of the trek that has stayed with me the most is the level of comraderie that I developed with the other 8 hikers and with the crew. Our group of 9 has stayed in close touch with each other all year and frequently text one another. Some of us have gotten together in person to reminisce and share time together. We fondly call ourselves the “Kili 9”. Four of us are planning to be together on August 14, the one year anniversary of reaching summit. I’m sure we will have fun recalling various aspects and moments of our climb. We’ll undoubtedly talk about events in our lives over the past year and plans for the coming year. The bonds of the relationships are very strong and offer a high level of support. Many of us have stayed in contact with certain key members of our crew. Jo even organized getting some of the crew into guide school and English classes so they could apply to guide school. She also organized getting a huge amount of clothing and gear to our guides and porters who so kindly took great care of us on our expedition.

I continue to be involved with the Fox Foundation. I participated in a 10K at Walt Disney World on it’s behalf this past January with plans to do so again this coming January. We were honored to be the keynote feature at their MVP Awards Gala event held in NYC this past April. I remain in touch with some of the staff at the Fox Foundation. Who knows. I may do another climb with them next year but not Kilimanjaro again. I’ve been there and done that.

I have given presentations of my climb to various groups with more scheduled. People have been very receptive to my story and have been very supportive. I will continue to advocate for those affected by Parkinson’s disease. I also continue to plan weekly hikes for my group of hikers. It has been an incredible year of life changing experiences. I will continue to live life fully and vibrantly as long as I can. I just need to remember to put one foot in front of the other and keep going. Thanks to all who have supported me in many ways as I travel this journey with Parkinsons’ Disease. May each of you find your way to live life to the fullest.

xr:d:DAF6Lv_7cVY:25,j:6934833533121747672,t:24011919

I’m still fundraising so if you feel impressed to contribute to my campaign here’s the link:

https://give.michaeljfox.org/fundraiser/5438589

Every year in April, the Michael J Fox Foundation hosts an awards gala to acknowledge the top fundraisers of the previous year. Since our group of nine who summited Mt. Kilimanjaro raised over $150,000.00 collectively, we were all invited to attend the MVP Awards Gala and bring a guest. Not only were we invited to attend the gala, which is held in New York City, but we were asked to be the keynote feature for the event. Of the nine of us on the team, seven were able to attend the gala. Betty Frances Thomason, the 19-year-old, and I representing the oldest on the team and one who has Parkinson’s, were selected to make the primary remarks on behalf of the team. Betty and I agreed on a back-and-forth dialogue format for making our speech. We worked hard to hone our remarks to be encompassing yet concise. We were originally given seven minutes to speak but this proved to be too difficult, and we ended up having about 20 minutes. Jo Simmons and Kristen Gillan also were to speak about the efforts we made to give back to the guides and porters who so kindly cared for us on our trek.

I booked my trip to fly out of Asheville around noon on the Friday of the gala weekend. While sitting at the gate waiting to board my flight to Newark airport in New Jersey, an announcement was made that the flight would be delayed due to an earthquake in New Jersey halting all flights into Newark airport. After more than one announcement about when our flight would leave, the airline representative made an abrupt announcement that we would be boarding in 10 minutes. Apparently, an opening allowing our flight to land had just occurred and we needed to be on the plane, settled in our seats and ready to take off in about 20 minutes. I have never seen a flight get all the passengers on board and buckled in as fast as we did that afternoon. Fortunately, this would now have me into New York in time for the Meet and Greet gathering the Fox Foundation was hosting for all the attendees of the gala. Jo Simmons who lives in Jersey City which is just across the New York harbor, picked me up and we made it to the Meet and Greet in time to mingle and enjoy reconnecting with our group as well as meet staff from the Fox Foundation and other fundraisers too.

On Saturday morning, we were treated to breakfast and then a symposium in which researchers from the Fox Foundation discussed lots of information about the research being done and the strides that had been made in 2023. Thanks to the Fox Foundation’s research efforts, a newly discovered biomarker was discovered. This is a test that can be done on spinal fluid or skin biopsies which will definitively diagnose PD. This has great implications for future research efforts as now the subjects in the study can be conclusively diagnosed with PD. Before this discovery, PD was a subjective diagnosis. There are other implications for this discovery, but I will not discuss all the great work that has been done toward finding better understanding, treatments and eventually a cure for PD.

The gala itself started at 4:00 p.m. that Saturday afternoon. We had fun getting gussied up for the formal event. It almost felt like getting ready for a high school prom. It was amazing how good we all looked in dress up clothes, hair and makeup done, and big smiles on our faces. I had purchased a pair of black glittery, rubber soled flats to wear with my sparkly dress. I wanted to feel more secure with my footing than I thought high heels would give me.

The order of events had awards presented to the top ten fundraisers first. Then there were some special acknowledgements and remarks from the President/CEO of the Foundation. We were to be the last segment of the program. Just before we were to go on stage I had a big urge to go to the bathroom. Katie, our contact at the Fox Foundation told me to make it fast. As I returned to the auditorium our group was already making their way to the stage. I made it just in time and walked from the back of the room straight to the platform. Whew!

This is the YouTube link to the actual remarks. https://youtu.be/1-lt2X9JJ94

The next morning, we gathered outdoors for a Fun Run along the Hudson River with many members of the Fox Foundation and other fundraisers. It was a beautiful day and the skyline of Jersey City and Hoboken across the river was magnificent. Our group gathered one last time for breakfast together before heading back to our homes. I stayed on a day longer to spend more time with Jo at her home. The next day was Monday, April 8 and New York was in the pathway of a partial solar eclipse. Jo took me walking along the Highline and to the Island to see beautiful flowers and views of NYC. Then we watched a partial eclipse from Liberty State Park on the New York harbor in Jersey City. On the way back to Jo’s we stopped at an Italian bakery as I wanted to bring some delights home to my husband Jay. The next day Jo took me to Newark airport where I boarded my flight back to Asheville. It had been a thrilling and exciting time attending the gala, spending time in New York and best of all seeing the group I climbed Mt. Kilimanjaro with. My life is forever changed and I will be forever grateful for all the Michael J Fox Foundation has done for me and all those dealing with PD.