7/17/2019 RAS Gravel Recap

Personally I cannot put all my thoughts into words right now however I will say every year that passes running this event makes me want to do it again in 364 days. This year things seemed to run a little smoother, slightly more dialed, few more helping hands and the key supporters were right there taking the load off.

The day… your typical Vermont day, filled with green, slight bit of moisture, the suns rays heating things up as it wore on and a great group of people to share a few cycling tails, food, music and conversations.

And then there was a couple film and photography guys I hired to tell the story and tell the story they DiD…..

https://www.youtube.com/watch?v=9I5E-2z-bnA

Ride On, Be well & Many Thanks.

jb

5/18/2019 Spring Sprung?.... Not! Well Maybe

As we are hoping for a bit more suitable riding and spring activity conditions here in Vermont I thought it would be more then appropriate to chat about a late April event in NEK that brings community together in a special way. This gravel event called Rasputitsa drew more attention this year then the average. Likely do to the extreme weather and road conditions heading into this late April day. Gravel cycling events in Vermont have really taken off in the past couple seasons not unlikely due to the shear effort it takes to complete, challenging conditions, the feel of community outreach and perhaps for a cause.

Vermont Rare attended this event the night prior as part of the many vendors displaying their wears, products and information out there to the world gravel riding. Specifically Vermont Rare was there first and foremost as a outreach, education and advocacy group on behalf of the rare disease community. I was quite impressed with the amount of people throughout the 3 hour time block, with a mock “Prince” band blasting his tunes in background, who took the time to stop by, chat, find out our cause and reason for being present. It was motivating and at the same time enlightening and education others on the connections the rare disease community has.

The following day my wife took the reigns as the representative at the Bittersweet event that Rasputitsa co-founder Heidi Myers started a few seasons back. Here is her takeaway.

1.)  In your own words, can you describe the Bittersweet 3.0 event?

The Bittersweet 3.0 event was all about food, nourishment and community for women cyclists.  The morning started with a delicious breakfast prepared by well-known chef and cyclist Lentine Alexis.  Lenten created with as many local ingredients as possible in the NEK in April.  Following breakfast was a panel discussion with people working in the local food community and highlighting the importance of community support.  We then hit the road for an easy ride to Honest to Goodness farm for more inspiration about food and community.  Before heading back on bikes, we were treated to sugar on snow and more casual conversation.

2.)  What was the vibe there?

The vibe was pretty upbeat.  The majority of the women rode the gnarly Rasputitsa the day before (I did not!) and there was a lot of chatting about conditions and course and hypothermia!  Even though the ride was challenging in every possible way, being in the room with 25 women who did the ride made me feel as though I was out on course too.  Definitely considering for next year.


3.)  There has been a lot of talk about "community" at many of these gravel events, can you see a connection between this and the rare disease or (any health related) community?  

We have often found a parallel between cycling and the rare disease journey and I think gravel riding fits that perfectly.  Navigating the road of a rare disease, either as a patient or caregiver, is extremely challenging - everything from the day to day management of  the disease to isolation within your community.  But there are parts that are also raw and beautiful.  Connecting with people who walk this path can certainly helps.  For example, even though I didn't ride Rasputitsa this year, I imagine it would have been difficult to get through the day alone - community, kinship and support is what carried riders through the epic conditions, not unlike the rare disease journey.


4.)  do you think this concept would take off in other areas of the state? 

I do think so.  Especially with the group of women who make it happen - Heidi Meyers, Lea Davison, Sabra Davison and others.  I'm don't know what the future plans are for Bittersweet but I think that it would be well received in any location because the focus is on being together, not being fast or competitive.

5.)  would you recommend to a friend?   

Absolutely!  And I already have.  A couple friends are waiting for word about Bittersweet 4.0. 

JB

3/22/2019 Spring Thoughts

Winter is long, hard usually is .. . especially for folks with a rare disease. Icy streets, cold temps, weak warmth of the winter sun. But think about the caregivers who we sometimes take for granted. These are the folks who are the “real” hero’s we need to give the shout out this spring. These are the people who take care of your child, son, daughter, sister, parents, handle all the details, doctor appointments, travel in whatever weather is thrown at them, bills, RX at the drug stores, carrying, lifting, wheeling, moving these folks from here to there. Oh yes, and what about the education part, the school system, coordinating IP’s, teachers, OP’s ~ you name it, the care givers are on IT. It’s more then A LOT. How do we help those folks stay mentally, physically, emotionally going?

I am beginning to see that it is a very under estimated part of this whole broken system. I don’t have the answers at this time. My goal for now is to educate, raise awareness of the huge undertaking and commitment that caregivers make. Give them as much support as possible, keep them healthy ~ Tell them you Love them!

jb

2/19/2019 The Mighty

This is a piece from the Mighty, a health topic related website. It strikes a cord not only from our own experiences with Shane but many others who we know who’s kids suffer from a rare disease or developmental issues. Sleep is important for your own mental well being, day to day life as well as your child’s and it is absolutely difficult when any or all of those sleep cycles get interrupted for extended periods of time. A idea that somewhat worked for us when Shane was really bad was taking turns with your partner either every other day or two days and two days off, all depending on your schedules. Personally we have not found a solution for Shane specifically regarding he his sleep either… still trying, experimenting, hoping that one day it all gets better. jb

I am tired. Tired in a way that is different than any tired I have known before. A deep tired. A tired that is beginning to feel permanent.

Six months ago, my 4-year-old son slept through the night. And then one night, he just stopped.

We learned his lack of sleep was related to his autism spectrum disorder, something I didn’t realize could be associated with autism before this. It’s one of the many things along this journey that I did not see coming.

The autism in our life looks different than the autism I learned about in textbooks. I had a pretty clear vision of autism in my head. It was filled with all of the buzz words: “fidgeting,” “nonverbal,” “rigidity,” “savant intelligence.” In my mind, autism looked one specific way. I thought I would see autism and recognize it instantly.

I never imagined I would live with my son for two years without recognizing his autism. But I did. Because autism is anything but textbook.

I’ve learned autism can be ever-changing. It can look different from one moment to the next. It is complex. It is intricate. It is so many things entwined together inside of my beautiful little boy. And just when I think I have it figured out, it can become something different.

That is what happened with sleep. Our son began sleeping through night consistently at 8 weeks old. And then all of the sudden six months ago, he just stopped.

As a parent, there are times when you expect not to sleep. After bringing home a newborn baby, you know there will be sleepless nights. When our children are sick, we often anticipate there may be some spotty sleeping going on. When we stay out way later than 30-somethings with two young kids should stay out. Because the later the parents go to bed, the earlier the children wake up.

These sleepless moments are an inevitable part of the parenting journey. You expect them. You are prepared for them. When our 4-year-old son stopped sleeping as a part of his autism spectrum disorder, we did not see it coming. We were not prepared.

RESOURCES FROM NATIONAL AUTISM ASSOCIATION

 

So for the past six months, we have been fighting through the sleepless nights and the exhausted days. We exist in a tired haze.

Our son sleeps through the night about once every three to four days. That night of sleep is bliss. He sleeps a full 10 or 12 hours. We wake up in the morning ready to take on whatever the world throws our way. The nights in between are not so victorious. We typically spend three to four hours awake coaxing our son back to sleep. And by the time we finally help him back to sleep, it is time for the parents to wake up and start the day.

We have tried many things to help counteract our son’s sleep challenges. Some remedies work right away and then taper off. Some remedies never work. Sometimes, we are not sure if a particular thing is working or not.

We have tried essential oils (in any and every combination possible), melatonin, reduced screen time, removing sugar, aroma therapy, calming music, white noise, blackout curtains, weighted blankets, compression clothing, etc. You name it, we have tried it.

The best stretch of sleep over the past six months came just after we introduced essential oils in a diffuser. We slept through the night for 10 nights in a row! We were convinced we found the right method. We were ready to happy dance the sleep deposit all the way to the bank. It was awesome. Until it stopped.

Some days I am so tired I could just cry. But our own exhaustion is not even the worst part. The hardest part is watching our little man struggle through his tired haze. It is seeing his behaviors at home and at school increase as a result of his limited sleep. It is watching the emotional roller coaster that follows his sleepless nights.

So we stock up extra on bold coffee and patience. Coffee for us and patience for each other. Because we are all tired. And nobody can be the best version of him or herself when tired.

We take our sleep when we can get it. We keep trying new things. We keep fighting through the exhaustion.

We are tired. The tiredness can make everything feel heavier. Magnified. But we just keep pouring the coffee and fighting forward. One sleepless day at a time.

February 2019

February is Rare Disease Month. Held the last day of February each year, World Rare Disease Day is an annual observance to raise awareness for 350 million people affected by rare disease globally. This February 28th, do what can you do to help elevate the cause and shine a light on rare disease patients and caregivers around the world. If you have a story to be told, know someone who does, want to learn more, reach out and use the #WRDD2019

jb

Holiday Fundraiser 2018

I am often taking back by the sheer generosity of some people. To give of oneself so altruistically for the good or betterment of someone else, is a gift. My brother-in-law has been organizing a small musical get together for the past 6 years. He, his wife, a few friends from the Boston area have band that have been jamming for quite some time. It’s coming up two Saturday’s ago now that the 6th Annual Holiday Fundraiser took place, this year in Morristown, NJ in a low-lighted, restaurant and bar named George & Martha’s. The tunes were awesome, atmosphere festive, great conversations and connection built with folks that it has been WAY too long and still the underlying message simply building stronger community relationships, advocacy, education about the every day struggles about living with and caring for a child with rare disease.

I want to thank all who attended the evening and a special heartfelt shout out to my extended family; Rooney’s, Oliveros, Rakow’s.

jb

10/1/2018 VT 50 Recap

I was so fired up to ride this event again this year. The day was set; chilly morning temps, to great New England riding weather with temps in the high 50’s, partly sunny day with no rain in the forecast and most of all, a awesome cause in Vermont Adaptive. I started off slower and a bit more patient then the year prior even though I was feeling pretty good and much more confident riding my Giant Trance then my hardtail I suffered on last year. I had goals, objectives that were lingering in the back of my mind, maybe my first mistake. Feeling like I was keeping my tempo, kcal intake, sharpness on some of the early single, things were going what I would call well. As I was closing in on mile 30 my mind started to wonder whether or not the legs were really there. After the 31 mile aid station things went down hill fast. The single track sections between mile 33 and 41 seemed much more slick then I was expecting and I didn’t recall it giving me such trouble in 2017. This is the time that you can really crush yourself with negative garbage passing through your mind; thinking too much, wondering, getting angry at yourself and your equipment. It’s hard to stay positive and keep giving it your all despite all the setbacks, but you can often surprise yourself by just keeping at it and not giving in.

This is exactly what raising a member of your family with a rare disease trains you to do every day. You become resilient, stubborn, unwilling to be satisfied with OK and keep pressing on for hope, answers, treatments, patience, help and anything to makes things a little kinder, a little happier, a little more positive.

jb

11/6/2018 Voting Day!

Voting Day today, we are hopefully changing some seats around. That said many of the health issues are still front and center, needing some assistance. Whether you agree with the ACA or not the big issue with many rare diseases is the “pre-exsisting” clause. Most kiddos or adults for that matter fall into this category.

Hope you made it to the polls.

jb

9/19/2018 VT 50

2018 Vermont 50 MTB Race

September 30, 2018

For 25 years, The Vermont 50 Race has been supporting Vermont Adaptive. This year they’ve set a goal of raising an additional $25,000 to honor our continued commitment to this organization. Personally, I am riding/racing this event, one with a goal to raise my own $1000 for Vermont Adaptive, two~ to better my 5 hour and 31 minute time of last year! Help me reach my goals and VT Adaptive’s Mission; Vermont Adaptive Ski & Sports is committed to empowering individuals with disabilities. We promote independence and further equality through access and instruction to sports and recreational activities.

By donating to my page https://runsignup.com/Race/45286/Donate/siTWeNM9ITN8DlxM

there is still just under 2 weeks to go. many Thanks jb

9/7/2018 Fall Redemption

What a busy, yet awesome summer of 2018!  Many family, personal and business milestones alike.  The end of summer denotes change as the kids head back to school, (me as well actually), cooler nights, shorter days, there's just that different feeling the air, makes me want the new season to last forever.  Ongoing change, adaptability, health & well-being evolution if you will, has always been the norm for our family.  This August was no different as we received the word that it was time for yet again another Chari Decompression surgery for Shane.  I'll save you the details and just say that neuro surgery leaves me speechless and am always truly amazed at what goes on inside the human body.  

We were very unsure of the recovery time as this Shane's second surgery of this nature and the first was a but rough.  SO far SO good as we sit almost three weeks out from our hospital departure.  Back to school for a short stint today and starting to resemble his old funny, active, genuinely happy self.   Life with a rare disease is as much of a windy road as it is less traveled, be resilient, hang on tight and remain positive.  

 

7/11/2018 RAS Gravel Adventure ~ June 30 2018

Think this sums it up.  Thanks Doug for riding and writing!

RAS Gravel Adventure - Peru VT

Written by Doug Southwick Sunday, 08 July 2018 00:00

Team Bikeman Race Reports

Officially this was a “ride”, but we had bib numbers, were being timed, and the 1st place male and female would be getting a prize. I’m not sure but that sort of sounds a little bit like a race. Anyway, I have done RAS twice before but that was at the old starting location. The course would be pretty similar so I did have a clue on what the day would be like. And that was 40ish miles, lots of gravel roads, several sections of class IV offroad (aka VT pave), plenty of climbing, and a few miles of road to connect the good stuff.

I would estimate there was 100 or so lined up for the group start. I recognized some local to me friends, a pro or two, but was a little surprised when Jack (organizer) pointed out Lea Davison (past MTB Olympian) was taking part in today’s adventure (which I thought was pretty cool). We had a motorcycle leading the way and the start was more friendly than sketchy. I decided to hang near the front so I could brag (mostly to my 4 year old) that I was riding with, and briefly ahead, of an Olympian MTB racer. After 4 miles of rollers there was a sharp turn into double track and the combo of being at the rear of the front group and a dude crashing, a few people in front of me put an end to my contact with the front group.

Overall, the loop was pretty awesome. The off road sections were all fun and some of the views from the gravel roads were incredible (picture a pond in the foreground and VT mountains in the background including the slopes of nearby ski areas). The climbs kept coming and day kept getting hotter and more humid. I never found a group to ride with but kept catching then getting dropped on the climbs by one particular guy. I'd say about 3.5 of the last 4 miles are off-road but mostly uphill, so it was fun and painful. Even though I felt really slow I did catch and pass three folks in this section and was happy when I started hearing the band. My goal was sub 3 hours and that time was fast approaching. I hit the finish at 3:03, no biggie - I’ll use that as motivation next year. At the finish there was small party that included (at no extra cost) food, beer or Kambucha, a great band out of Boston (Jimmy Cans Redemption), and later, a raffle. I ended up winning a really nice MTB helmet that was a little small for me but fit my wife perfectly. And the most important part was a good chunk of money was raised for RASopathies (it's a rare genetic disorder - RASopathies, CFC or Cardio-Facio-Cutaneous) disease with has no cure (yet!).

5/25/18 EMR ~ climb for Shane

And a climb it was.  15 laps around a 11.6 mile loop  (including the KSR finishing stage climb of 1300 ft. elevation gain) all in 11 hours, 282 miles and over 20k feet of climbing.  Vivien Rindisbacher (KMS class of 2017) took over the reins to lead in this endeavor of riding as well as fundraising $1400 for his lap pledges.  Many other KMS student~ athletes and staff took to their bikes as well for some laps up East Mountain Road.  Ansel Dickey, another KMS alumni, former pro cyclist now focusing on gravel events was also on hand to ride with Viv for a total of 10 laps on the day.

These acts of Kindness, Character, Altruism are what sets people apart.  No one asked these young men to suffer as they did for a cause they are likely just discovering is real and affects peoples everyday lives.  

https://www.killingtonmountainschool.org/so/aMEIdq5O#/main    

5/20/18 MDBR Philly 2018

Today is the day! Thank you to our riders and everyone who donated to The Million Dollar Bike Ride for Orphan Disease Research for RASopathies Research!  RAS Riders raised $33k and with UPenn matching grant, turns it into $66 just like that!  A project that could not have been completed without the work of Junior KMS https://www.killingtonmountainschool.org/  student, PJ Bovaconti who has led the fundraising efforts for the @rideforshane team.  This is a magnificent gesture in the name of Rare disease research and awareness.  

jb

10/11/17 Steps to becoming a parent advocate

When your lifestyle becomes overwhelming because you are caring for a medically complex child, the idea of becoming a rare disease advocate becomes daunting. "How do I add advocating for my child's rare disease community when I can barely keep my head above water?" is something I hear all the time.

Having "been there" with my daughter Hannah, I remember that feeling quite vividly so I wanted to put together some simple steps for someone who wants to get involved but is not sure how to start.

To advocate for your rare disease community does not mean taking on every aspect of change that needs to be made. Advocating in the rare disease space simply means "putting in the effort to create lasting change."  

1] Take a second to think about this question: What are the top 3 things you would you like to see to help increase your child's quality of life? Would it be related to better healthcare information? Better therapeutic options? More research? Connecting with others who understand what you are going through?

 

2] Now that you have your top 3 things, single out your most important one and write it down on a piece of paper. This will become your goal. Take that piece of paper and tape it to the upper corner your computer monitor or somewhere else you will see it often.

3] Spend 20 minutes expanding your goal, this one topic. Define what actions you would like to see take place. List 2 or 3 objectives that you feel you feel are do-able. For example, if your goal is healthcare provider education, then one of your objectives may be to share your rare disease story with more physicians.

4] Once you have your goal's objectives in place, start to build strategies on how you can accomplish each of the objectives. Using the example above, contacting specialists or genetic counselors at a local teaching hospital would be a great strategy. Ask for help from other parent advocates (like me) regardless of what disease they represent - we are very much a #payitforward community.

5] Create a realistic timeline of what you are able to do and when so you can take action on your strategies. You do not need to do everything at once - pace yourself in what needs to get done so you don't get burnt out too quickly.  

Most importantly, you are not alone in your journey. Each parent advocate you see in this community, like myself, has been where you are right now - filled with uncertainty, starting with baby steps, and support from others who have walked in my shoes before.

"once you choose hope, anything's possible"  Christopher Reeve.

jb