International MPN News, Science & Opinion

24 hours around the world

 

Did you ever really want to do something to help cure MPNs?

This is our time to step up.

With the explosion in breakthrough MPN therapies this is not the time to cut research fundingBut Federal and private investments in research have been sharply reduced due to worldwide economic conditions.

 The MPN Research Foundation has already invested nearly $9 million directly into research that has aided every aspect of MPN research from JAK2 to fibrosis reversal.  Its small staff is our front line to identify and fund promising MPN research projects.

 MPNforum has been working on an International 24-hour Swim, Run, Ride Event to focus attention on our rare diseases and raise money for the Foundation.  Now’s the time to step up, sign up, get your ideas across and help make the difference!

 The idea is simple:  During one single 24 hour period, anywhere in the world, local, swimming running, and cycling clubs collaborate with us to organize a local event supported by participants and their sponsors.  You can become part of this major event by signing up to organize an event, enter a local event, or volunteer to help manage an event in your town.

 Sevy Goulielmos, who has participated in fundraising cancer bike rides, is taking the lead for us. She has already talked with the MPN Research Foundation.  Hopefully, we can all pull together, worldwide, and fund the next big MPN breakthrough on the way to a cure!

 Taking charge of our MPN Destiny –

A simmering project of meaningful participation for the entire MPN community

–          Sevy Goulielmos

 With the recurrent discussions over the past year regarding our various fitness challenges that included cycling for cancer research fundraising, Zhen had a vision.

Why not take a frontline, active approach to affecting a positive outcome for the course of our MPNs? 

 With key collaborations worldwide, we could play a significant role organizing our own international event that would be designed to directly benefit MPN research and awareness

With an alliance of valuable volunteers from our entire MPN community around the world, existing sporting clubs around the globe, the MPN Research Foundation, patient support groups, the  MPN Coalition and corporate sponsors, it is possible to coordinate our efforts and organize a fundraising event geared specifically to benefit MPN research. .

 The idea piqued my interest right away.  I had been searching for event challenges that would most directly benefit blood and bone marrow cancer research. I had yet to find something quite right. With Zhen’s idea in mind, I tapped into my past experience of collaborating with North American and overseas colleagues to organize several international events.

As I cycled for 200+km over 2 days, in a cancer fundraising event this past July in Canada,  I pondered and observed. I paid especially close attention to what made the event I was participating in enjoyable and successful . I considered which of the components were the most important to produce a simplified but effective fundraising event.

We discussed the concept further with our resident fitness enthusiast, Jeremy.  We also enjoyed a series of productive discussions with the MPN Research Foundation to bring the key ingredients together and add some fresh elements to the plan. So, since this summer, I have been running with the idea and researching the potential in greater detail to build a first-stage plan of action.

 And, mostly, all of you have inspired and touched me with your stories and consistent efforts to help one another with the different stages of our MPN adventures. With that in mind, I open the possibility to all of you to see how this particular story will develop.

The BIG idea – 24 hours of Worldwide Action

Picture this… within a 24-hour period, eager participants will gather at the starting lines or event venues in different regions of the globe (Ex: Australia, Japan, UK, Canada, USA, etc.) where we can have regional event managers and volunteers from our MPN community circle to manage the participants and activities. As 8am reaches each particular region, participants will be ready to begin their activity.

They will either swim a selected distance at the designated area or run a choice of distances with the collaboration of the regional running club or ride like the wind along a route selected by one of the region’s cycling clubs. And to add to the festive atmosphere and open the event to even more enthusiastic participants, interested volunteers could organize a potluck lunch or dinner, a block party, a comedy/variety show, any event as long as it fits into the 24-hour timeframe.

The event will be designed so that each registered participant will be able to collect donations through the First Giving (www.firstgiving.com) structure that will be directed immediately to the MPN Research Foundation. Each participant will be given a personal fundraising page where they can encourage the generosity of potential donors with his or her own story.

This is a major project. The most important element in this vision is the involvement of dedicated volunteers for each component of planning, promotion and presentation of the actual event activities in each region. It is very important to the core goals of our event to keep expenses low by building this proposed network of volunteers and confident collaborations. The working budget would be collected from sponsors and from reasonable registration fees from the participants. This would allow us to directly assist the research and treatment programs of our MPN community’s hard working MPN Research Foundation with all the donation funds we raise.

Time is certainly pressing when it comes to MPNs. However to produce a quality event that could potentially be repeated periodically, we would take the time to organize the details carefully to make sure we have confirmed and reliable alliances.

Once we are confident with the basic structure, we can launch to the next level of activities where we can prepare to promote the event(s) to potential participants and sponsors. The promotional campaign would provide an excellent opportunity to also build awareness of MPNs/MF worldwide.

 Ideally, the first 24-hour grand event will launch in different regions of the world in the Spring of 2014. However, as soon as we are confident of the event details and volunteers to be able to officially launch the introduction of the event, participants would be able to begin registering which would also activate the ability to collect donations and put that money to work for earlier and more accurate diagnosis, better treatment and a cure.

 How can you be actively involved?

I would be happy to volunteer my time to play a principal role to help direct the overall activities. However, we need your help to move forward. We are interested to know where around the world we have people willing to participate in the development of this proposed 24-hour event.

  • Would you be willing to be our main contacts for regional cycling, running or swimming clubs and local authorities for permit details?
  • Would you be willing to organize a regional activity during the selected 24-hour format other than a sporting activity (i.e. potluck dinner, block party, bingo, dance-a-thon, etc.)? All ideas are welcome for big, small or in between activities.
  • Can you help with event logistics for regional activities?
  • Can you help with PR/media promotion, sponsorship campaign, insurance brokers, etc.?
  • We would like to know what brilliant ideas, skills and experience you would willingly and enthusiastically offer to see this idea grow to an actual event?

Our event would be developed in as simple and straightforward a format as possible with room to grow. However, I believe there is a place for a neatly organized grassroots event that could also capture the interest and enthusiasm of participants and donors worldwide.  We will provide more information once we sift through feedback and more research to finesse the event planning details on an international scale.

To be able to move further forward with this dynamic vision, the question to consider is… Do you want to become an active player and help develop our own powerful  fundraising event for a swifter solution to our MPNs?

Well…do you?

>>To get involved:>>  Contact me:  “Sevy”  sevy@live.ca or ourMPNforum@gmail.com

Comments on: "24 hours around the world" (11)

  1. Sevy Goulielmos said:

    Thanks for the question, Mary.
    What we have in mind is the second scenario that you expressed so well….The worldwide wave of activity across time zones… Whether it’s a potluck dinner, a spinning event at your local fitness club, a karaoke cocktail, a running activity for a specific distance or anything in between, it would take place on the chosen event date. It can be a 1-hour activity or a longer duration, especially if it’s a distance event (running, swimming or cycling).

    Within those 24 hours in the different time zones, we would have a potential for many more willing people to be a part of this wave by hosting an entertaining activity or helping to manage a regional event to help raise funds.

    Once we sift through all the volunteers and good feedback, we can determine the best way to keep this fundraising concept as straightforward as possible to inspire participation and encourage donations for the MPN Research Foundation.

  2. Mary Cotter said:

    I am a bit confused by the concept. Are you envisioning a Relay for Life type event sponsored by the American Cancer Society where individual participants do something for 24 hours like walk laps on a track in exchange for fund raising pledges? Or are you thinking that this is a world wide event across the time zones where some sort of fund raising activity will take place at a designated time, 8 am, in whatever time zone you live so that there will be a world wide wave of activity for a period of 24 hours with a new and different event starting at 8 am eastern time, then central time, pacific time, etc?

  3. Sevy Goulielmos said:

    A Rock-a-thon! Arch, I can see it!!!
    Hmmmm…yet within that scenario lies the right idea. We can incorporate (almost) any entertaining activity into the plan.
    You made me smile…Thank you!

  4. Sevy, if you want, I’ll organize the “MPN ROCKERS”. Those of us who can no longer race nor run, can still float but can’t swim. We will sit in our rocking chairs on our front porches and cheer y’all on. A.

  5. Sevy Goulielmos said:

    That’s what we’re looking for, Ellen… Whether it’s a running event or a potluck dinner or anything in between…The idea is to coordinate activities and events over that 24-hour period that will help generate funds for the MPN Research Foundation. Simple and sweet is just as effective.

  6. I’ve never been involved in a charity run event and so have little expertise to contribute on that front, but I can organize a potluck with the best of them. If nothing else, I can do a local publicity event of some kind. It’s a great idea, Sevy – thanks for organizing this!

  7. Sevy Goulielmos said:

    Thank you to the lovely people who have already expressed their interest to help!
    Yes, it’s a big project. Having a dedicated organizational team will make the difference. The bonus of having an international network of people in the MPN community with various talents and experiences…and internet, Skype, etc…makes it possible to seriously consider such a fundraising event.

    Over the next few months we will refine the event based on the feedback and the response of the volunteers that we can confirm and following additional regional research. We will keep it realistic and as straightforward as possible. We have important elements working in our favor that convinces me we can produce a worldwide fundraising event.

    So, whether you have a bit of available time or would like to offer a specific expertise for such an event, I would love to hear from you.

    The enthusiasm has been encouraging. Thank you…please keep it coming!

  8. Your enthusiasm is wonderful. Thank you for your efforts.

  9. Barbara Kurtz said:

    First of all I can’t tell you how much I enjoy reading about your cycling Marathons both on the forum and facebook. You are doing exciting things and your enthusiasm comes through.
    I’ve been following the attempted efforts for a marathon in one of the cities close by and the failure of the first year to have enough water and toilets or well marked paths. I say this not to discourage, but to comment on how much thought and expertise is needed to organize such an event. I’ve never even participated except to financially support someone who did. Judging by other walks, runs and cycling events for various fund raising, getting participants is probably the easier part. Organizing makes my head explode.
    But it would be amazing to see your vision of a world wide event happen.
    I’m not sure how to help at this point, but with some direction from an expert I’m willing to do what I can.

  10. Kathy Van Meter said:

    I will help, Sevy. Sounds amazing.

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