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Hope for Kids!

Camp HLC is for children and young adults who have or have had a parent or grandparent living with ALS. Camp HLC is a fun three-day over night (June 6-8, 2014) retreat for children. It is an opportunity to have fun, to be challenged through team building exercises and to meet other children who are in the same situation.

Camp is provided free for ALS familes by Hope Loves Company and sponsors. All meals and activities are included.

Camp is for children up to the age of 21. For the best camp experience, we recommend that children under the age of 11 come to camp with a family member or chaperone.

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The most immediate present and future of ALS Connections

We have been a little quiet recently.  In fact, we have done a little soul searching.  Much of what we do on this site is the work of two people, and our lives have been very busy.  We also got word that the technology behind our video platform was closing its doors.  We seriously were giving consideration to shutting the site, figuring that it was no longer as useful as it needed to be.  After all, we have some out of date items, it is hard to search for archived news, and links are broken on the site to previously working feeds.  That represents a lot of work.

But, before we simply gave up, we decided to poke around.  And, what we found, encourages us to revamp the site.  We are able to reshape the resources section with easier to navigate profiles that can be updated by the owners.  We can add a more robust crowdfunding platform directly to the site to assist with your fundraising needs.  We can revamp the way our feeds work to make sure we are delivering the latest news and information, but in a way that you can connect it with archived stories to assist you in research.  We think we even found a way to keep the video platform going and improve it as well.

So, we look forward to a new beginning for ALS Connections as we look to build a robust resource for you.  In the meantime, you will see a lot of this website begin to go dark as we prepare for new technology to be added to the site.  That does not mean that we are not going to be active.  In fact, we want to encourage you to join us at several upcoming events:

March 25, 2014 – LiveLikeLou.org will hold their first telethon and media partner WTAE – 4 in Pittsburgh will stream it live on the web.  Tune in at 8 PM and see a very special ALS story and support the mission of LiveLikeLou.org as they make a difference in a patient, family or researcher’s life.  More information is available at http://www.wtae.com/chronicle-editions and you are invited to make a donation at https://community.pittsburghfoundation.org/sslpage.aspx?pid=512.

May 3, 2014 – I never updated you on my sky dive adventure.  As luck would have it, I was getting my safety briefing when weather rolled in and I was not able to jump.  In life, we always look for a second chance and Skydive for the Cure will return on May 3.  Your generous donations of over $750.00 will be honored as I am slated to be #3 out of the plane that morning.  I invite you to join the festivities which include music and other activities along with 100 brave souls jumping from a perfectly good airplane for the Brigance Brigade.  Information on the event is available at http://www.skydive4als.com/.   You can support me with a small donation at http://www.gofundme.com/3t49g4#sthash.758QuNkE.dpuf.

June 6-8 – Hope Loves Company announced HLC Camp 2014.  This is a three day overnight camp for teens and young adults who have or have had a parent/grandparent with ALS.  The camp is free, but we invite you to support Hope Loves Company.  More information is available at http://www.hopelovescompany.com/#!camp-hlc/c1g93.  Melissa attended last year and even overcame her fear of heights.  So much so, that she will also Skydive for a Cure in May.

That is our immediate present and future.  I ask that you bear with our dust as we remodel this site and as always, we look forward to hearing your ideas.

Best Regards,

Christopher and Melissa
The Team behind ALS Connections

Skydive for the Cause

On September 21, 2013, I am going to jump from a perfectly good airplane. Why? My mother had always wanted to skydive and I said I would do it with her. Amyotrophic Lateral Sclerosis (ALS) took her life far too soon and we never got the opportunity.

As many of you know, I started the website ALS Connections in her honor to help others fighting the disease which has no known cause or cure. But together, we are making progress.

I was contacted on Twitter not too long ago and asked if I would share an upcoming fundraiser. I said sure. ALS Connections is always happy to help. I took a look at the fundraiser and it said “Skydive for the Cause, an ALS fundraiser. Yes, I do believe in fate and I can think of no better way to honor my mother a year after her passing by jumping out of a plane to raise money for ALS families.

Skydive for the Cause will take place on September 21, 2013 at Harford County Airport in Churchville, MD. 70 of us will be jumping and all money raised from the event (goal of $50,000) will go to the Brigance Brigade Foundation to help families that are dealing with this disease. I can tell you first hand that this disease is hard on families both emotionally and financially and I would like nothing more to pay it forward to another.

If you are in the Baltimore area, I invite you to join us.  Admission is $15 and there will be entertainment, food, games and much more.

You can help me raise my goal of $1,000 to help these families in my mother’s honor. I know she would have wanted to help others if she could.

I promise to share with you pictures, videos, and stories even if I am screaming like a baby throughout the jump. :)

You can make a gift here: http://www.gofundme.com/3t49g4

Call to action from AllTrials

Dear Friends

Today the new head of pharmaceutical company Lilly UK Jean-Michel Cosséry said that patients don’t want companies like his to spend their money sharing “old data.” These “old data” are, of course, the results on which all treatments in current use are based! Perhaps he is hoping that AllTrials can be headed off into a siding, like all previous attempts to establish transparency.

A committee of MEPs will soon vote on proposals that would increase transparency of clinical trials. However, there are 350 lobbyists for the pharmaceutical industry at the European Parliament. MEPs are hearing Cosséry’s arguments against transparency (and others) every day. We have until 29th May to make sure they hear our arguments.

  • The trust of patients who have volunteered for clinical trials is betrayed when findings generated by their participation are locked away
  • Incomplete information means doctors could make bad treatment decisions and miss opportunities for good medicine
  • Researchers don’t know what was found in previous trials, or even that some trials happened, so trials are repeated unnecessarily

If you are in Europe:

The committee looking at the clinical trial regulation has 67 MEPs from 22 different European countries. Their names, the countries they represent and their email addresses can be found here. http://www.europarl.europa.eu/committees/en/envi/members.html#menuzone

Please write to the MEP(s) from your country telling them why you want increased transparency. Let us know if you have written to them and if you get a response.

If you are not in Europe:

We know these kinds of discussions are going on with every regulator around the world. Please talk to us about how AllTrials can take off in every country.