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SAN FRAN
From the early morning smells of sourdough bread baking…to the sun setting over the bay, it’s no wonder why Tony Bennett sang that it’s easy to leave your heart in San Francisco. On Sunday NFE runners, led by co-captains Josh Thieriot and Cathie Leys, will put their hearts on the course for NF Heroes in the San Francisco Marathon. Steve Kendra will be staffing the event. The San Francisco Marathon is unique because it offers two half marathons, one marathon, a progressive marathon and a 5K. The NFE San Fran Team has raised more than $17,500. You can help them meet their goal by donating here.
RESEARCH
Check out Dr. Kim Hunter-Schaedle’s thoughts on Avastin and Breast Cancer on the Foundation’s blog this week. In the news this week, a Food and Drug Administration advisory recommended that the drug Avastin (bevacizumab), the best selling product of Roche, have its 2008 approval for advanced breast cancer treatment revoked. (Read more).
BUTTAR BUDDIES
Tracy Draper has helped NFE partner with Buttar.com, a race organization for events such as triathlons. Tracy recently competed in the Moss Park Tri in Orlando, Fla., and placed fourth in her age group. She is pictured here with her daughter, Suzie.
Active Fundraising Page of the Week Monica Hattoon-Green Why we like it: Monica’s clean design allows the viewer to clearly get the message: little Maria, a family friend, has NF and could really use a cure. She succinctly describes what NF is and what can happen when symptoms manifest. She also directs viewers to learn more about research advancements by using “Team Fundraising Dollars at Work.”
Your first triathlon race is just 30 hours away. You have trained well, but you can feel the nervousness beginning to creep up from your abdomen into your throat. You can feel the pre-race jitters. This is not the time to panic but to prepare.
Make a list of “must haves.” With three events to pack for, it is essential to write it down. I have heard of people forgetting their helmets, shoes, towel and even bike shorts! With so much to prepare for, how can you make sure that you have everything that you really need?
Mentally picture yourself arriving to the venue. What will you be wearing? You exit your car and head over to the packet pick up. You will need your ID and proof of USA Triathlon membership (either annual or you can buy a one day membership). From there you will probably begin setting up your transition area. What will be in your gear bag? Picture every item that you need for your swim; now for your bike and finally for your run. Each component has essentials that you are essential for competing. These are the first things that you want to make sure you pack. Now imagine that you have crossed the finish line, and you even won your age group! You have to hang around for awards! Will you want to freshen up some? At the very least, pack a washcloth and deodorant. Picture the things that would make you feel a bit better after a race. Be sure to put those in a separate bag that you can grab when you put your bike and other gear away before awards.
Tape a motivational note to the tube of your bike. I use a quote from the movie “Facing the Giants.” On a hot pink sticky note I write the words “do your very best” and tape it to the bike tube. The motivation helps a lot during training and on race day.
Write down every thing that you see in your mind. Feel free to use my “Tri List” that I keep to refer to before each race; try to stick to the essentials.
PRE-RACE
- snacks such as bagel or energy gel (my favorite: raisins)
- three water bottles – two with water, one with electrolytes (drink from one as you drive to the race, but be mindful because you don’t want to feel sloshy)
- safety pins (in case there are none in your race packet)
- small towel to set up in transition
- race clothing – think: will you put on our NF singlet before you ride? Do you have an NF tri top so that you don’t have to change clothes at all?
SWIM
- goggles
- swim cap (provided in your race packet)
- hand towel (to wipe face and body if you wish prior to ride segment)
BIKE
- helmet
- cycling shoes (if you wear them)
- sunglasses Be sure any excessive weight is removed from your bike; one Bento box is sufficient for nutrition.
RUN
- running shoes (socks optional; they are hard to put on wet, sandy feet)
- sun visor or hat (optional)
- racing belt (with your number already pre-attached)
POST RACE
- the organizers usually have food, but if you like something special, pack it
- deodorant, hair brush, change of clothes (optional)
Lay everything out on the floor or your bed prior to packing. Review the list. Go through the race in your mind again, making sure that you have not left anything out. Remember that there are essentials, and then there are extras. The extras often are what weigh us down and slow us down. You don’t have to have socks; you do have to have shoes. You must have your bike, but you don’t have to have three extra pony tail holders. You do need to think about your weakest event and dress for it. Can you bike without padded pants? Probably. Is your swim the best segment? Then wear a swimsuit and throw a pair of shorts over it for the rest. Is running your least secure event? Then be sure to dress to run out of the water. Is biking a struggle due to saddle soreness?
You have trained hard, and now you have now planned well. Think positively on race day, and you’ll be pleasantly surprised how easy and addictive triathlons can be.
Tracy Draper is the NFE Team Captain Coordinator. In addition to being on the NFE staff and a full time mom, Tracy also works as a personal trainer in Florida.
As I sat in a large conference room in a Las Vegas hotel, I surveyed the room looking at many faces that I had never seen before — faces that I could have met in the grocery store, or on an airplane, but would have had no connection with before now. There were people of all ages. Some faces were pleasant and smiling; others were heavy and obviously burdened with concern. Some faces showed joy despite uncertain circumstances; others expressed happiness just to all be together. However, in the midst of 100 individuals listening to the presenters explain the challenges of NF, I saw it very clearly – the one aspect that we all had come to learn about: the many faces of neurofibromatosis.
There were young professionals, middle-aged parents, wise physicians, ordinary individuals, and others with and without a direct touch to NF in the room. We were a beautiful assortment of people; a group united because of a disorder that has come to cause such disorder in our lives.
We were encouraged as we formed smaller groups by geographic region, providing time to get to know each other better. We ate together. Some cried together. We learned together. New friendships formed. Many had only met via phone or social networking. By the last day, however, we had even walked together along the streets of Las Vegas and experienced a surprise visit from Elvis. After spending hours in conference rooms, dining facilities and yes, even the casinos, we all became a part of the bigger NF family.
Clearly, we all were there for one cause. While there are many faces to neurofibromatosis and its progressive effects on so many lives, the best and most beautiful one that we took home is this: the shared face of hope.
Let us continue walking toward the goal of the cure so that we will see an end to NF as we know it.
Keep hope alive!
Tracy Draper is the team captain coordinator for the NF Endurance team.
Watch the slideshow below to see some of Tracy’s photos:
SAN FRAN
BUTTAR BUDDIES
By: Tracy Draper