A Message to our Family & Friends...
(We've updated these pages as of 6/1/15.)
LAMposium & Worldwide LAM Awareness! (3/15 - 6/15)
Today is the 5th Worldwide LAM Awareness Day. It's a great day to just say THANKS. Thanks to everyone for their continued support.
In March, we had such support at this year's LAMposium. Kenny worked the entire conference and sat in on a lot of the presentations. He is learning a lot about the new research and meeting lots of other patients. There was alot of great presentations and with more research, the doctors and scientits believe they can find a cure! Thanks to Kenny's Aunt and Uncle Henik, we were able to have the entire family in Chicago again for the Gala. Everyone volunteered at the Gala - even the kids - and we all enjoyed a good meal and heard some touching stories.
The Benich Family & Friends have been part of sending over $12,000 to the LAM Foundation over the past several years; we thank you all for your generosity! We hope that the money raised at these various events will eventually lead to a cure for LAM. This year's LAMposium raised a record total of over $200,000.
Personally, Danielle is still taking a drug from one of the earlier trials funded by the LAM Foundation. So far, it seems to be severely halting the LAM's progress - her lung capacity hasn't gotten any better, but it hasen't gotten much worse either. Since there wasn't even a treatment available when she was diagnosed, your support does make a difference!
Next year's conference is going to be in Cincinnati. Hopefully we can take a roadtrip!
LAMposium! (3/27/14 - 3/30/14)
Kenny's First LAMposium: Giving Back!
“Don’t worry, you are not in this alone.” That was one of the first things that Sue Brynes, the director and founder of The LAM Foundation, said to Danielle and I in December 2008 during a phone conversation. That phone conversation was the morning after we contacted the LAM Foundation’s website while searching the internet because of Danielle’s CAT scan diagnosis we got earlier in the day.
Since that first phone conversation over 5 years ago, our family has tried to be involved and support The LAM Foundation. We are personally not in the position to help financially; however, we can give our support and get our family and friends involved.
We’ve sold tickets to raffles, organized small fundraisers and attended a couple of events. When it was announced that LAMposium was going to be in Chicago this year, I figured it would be a great time to volunteer and give back. Over the four months prior to LAMposium, I was on conference calls with the staff and other volunteers. The excitement of the staff was contagious; I can tell they love what they do and wanted the event to be perfect for everyone. Ideas were shared, decisions were made, and it was truly a collaborative effort. Our first step was to help with the graphic design; we helped take the “napkin” drawings and create some artwork for the event.
Danielle wasn’t able to attend, but I wanted to give back and help. I asked the staff if I came, could they put me to work – and I’m glad they said yes! I arrived on Thursday night and helped set up and run some errands. I also worked the registration table and was able to put faces to the names I see so often on Facebook and on the ListServ.
Since I am a tech guy, my main job for the weekend was to run the patient rooms – make sure the microphones worked, the PowerPoints were loaded, and the patients got to the correct rooms. The advantage to that is I got a ton of information while I listened to all the sessions! I got to hear great doctors, nutritionists, psychologists and staff. We all picture these experts as serious and too busy all of the time, but hearing them speak and talking with them during the sessions you can tell that they are very caring, companionate and sometimes even very funny.
While directing patients, I got to meet some a lot of the LAM patients that I’ve seen on Facebook. I got to hear some of their stories, and it helped me in our family journey knowing that we are truly not alone. While the patients and their families were going to sessions, there were over 100 doctors, scientists and clinicians holding sessions of their own to discuss the technical advancements and the next steps they want to take to find a cure for LAM.
We also wanted to get our family and friends involved. That led us to get enough support to sponsor two tables at the Breath of Hope Gala on Saturday evening. We had a group of 27 at the Gala: 22 guests and 5 children. We all helped set up, registered all of the guests, and assisted during the event. The younger kids were runners during the auction, and the older kids passed out glow necklaces for everyone that made a pledge.
The Gala was spectacular; the speeches, food and music were all great. The auction items were numerous, and the most fascinating was the auction. It was a pledge of money for research. The bids ranged from $10,000 all the way to lots of $25 pledges. The total amount raised during the live auction, in a matter of twenty minutes was over $170,000. My seven year old nephew even pulled $1 out of his pocket and donated it in honor of his Aunt Danielle.
After the excitement we all enjoyed some casino games with fun money and danced. Some stayed all night long and some went home early since we were so close, but everyone went away with more love and compassion for the LAM community.
Sunday was the final morning and at breakfast a slide show was running with many pictures from the weekend. There were a couple more sessions and then the final wrap-up from the scientific discussions from the weekend.
The 2015 LAMposium is scheduled for March 26th-29th at the same location, Hyatt O’Hare in Chicago (Rosemont). I encourage all patients, family and friends to come. And, if you can, volunteer during the weekend. Feel free to contact me if you have any questions about the event.
I was so happy to have the opportunity to volunteer. It’s really great to fully understand those first words spoken to us by Sue Brynes back in 2008 – we are truly not in this alone.
Thanks to our good friends Chris Perez and Jack Atwood for organizing a fundraiser for the LAM Foundation. We had 27 team members join Da' Region Mudders and with each member, the Mudathlon donated $5. Everyone that participated had a great time. You can check out more pictures of the day on our family blog or our Facebook album.
Thanks for your support!
~The Benich Family
Join Ken and Delaney with the Da Region Mudders
With a jump start from Chris Perez and Jack Atwood, Kenny's soccer team has started a fund raising team in support of the LAM Foundation for the Mudathlon in Valparaiso, Indiana. They are looking for more team members to join them on July 20, 2013 while running through the mud and muck in Valparaiso. The Mudathlon will donate $5 for each entry on the team. In addition, they'll be setting up fundraising pages, so if you can't run... please consider giving a donation or coming out to support the team -- more information to come about that.
Here is how you join the team if you are interested:
1. Go to the Mudathlon website and select the July 20th Northwest Indiana race.
2. On the first page, make sure you select you are joining a team.
3. The next page will be a drop down - we are Da Region Mudders.
4. Enter your information and answer several other questions. One of the questions will be your start time, select 9:15AM Start Time. You can pick any time you like, but it is suggested that we all run at the same time to promote our team.
5. Finally at check out, in Promotional Code/Discount, type in LAM Foundation and hit apply. You should see a discount of (0.01) on the bill which is confirmation that it accepted the code and will apply the $5 to the LAM Foundation. (It is very important to type in LAM Foundation to ensure that the donation makes it to help support LAM research!)
6. Welcome to the Da Region Mudders team!!!
There is no limit as to how big our team can be! There is no "try-outs" or rejections. Our team takes ALL! Quoting Chris, "Bring us your slow, your old, your tired and we will take them!" If you know of anyone who loves to run or is planning on running the race, please pass this information along. If you'd like to talk to Chris, his contact number is 219-561-5160.
Thanks for your support!
~The Benich Family
Fundraiser for the LAM Foundation - the LAM Raffle is back! (3/8/12)
Don't we all need a vacation? Once again we are helping the LAM Foundation sell tickets to raise money to fund research to find treatments and even a cure for LAM. This is our third year involved with the LAM Raffle, and our goal is to beat our amount raised each and every year! We can only do that with the continued support of our family and friends -- WE CAN'T THANK YOU ENOUGH! Check out the link below for all the information and help support the LAM Foundation:
Fundraiser for the LAM Foundation - Danielle is donating 20% of the sales from this Close To My Heart online gathering! (12/31/11)
Danielle has been a consultant with Close To My Heart now for almost ten years. The LAM Foundation has always provided unmeasurable support and has been instrumental in their ongoing fight for a treatment and cure for LAM. Close To My Heart has a huge variety of papers, inks, accessories and more for scrapbooking, cardmaking and crafting. This is an online gathering, so it is easy for everyone to browse and purchase whatever they want and have it shipped directly to them, with 20% of all the proceeds going to the LAM Foundation.
Here is the link to a web page with all the details, where you can start shopping right away, invite a friend, or even see a few card ideas that Danielle has created: Fundraiser for the LAM Foundation
THANKS - 4th Annual Breath of Hope LAM Charity Benefit! (11/12/11)
We'd like to thank all our friends and family for either attending or contributing to the fundraiser for LAM in Chicago: the 4th Annual Breath of Hope LAM Charity Benefit. It was on Saturday, November 12, 2011. My buddy Dennis and I went to enjoy the food, drink and auction items. The benefit was able to raise over $100,000 for the LAM Foundation. How unbelievable is that! Thanks again to EVERYONE for their support. Here is Dennis bidding on something and a finished artwork piece that an artist painted while the bidding was going on! It was really cool.
LAM Foundation Fundraiser - Raffle (5/11/11)
The results are in! First of all, THANK YOU to everyone who supported our fundraiser and purchased tickets for the LAM Raffle. I just got an e-mail from Holly Gersbacher, the Development Coordinator for the LAM Foundation. She let me know that they raised over $120,000 during the Gala on Saturday night. As for raffle tickets, they sold about $11,000 in tickets! I feel very blessed as we personally sold 201 tickets to 82 different people and raised $4025! With about 1/3 of the tickets for the raffle sold being our group – I hoped we would have at least one winner. Sheepishly, I have to admit that the Benich Family was lucky enough to win THIRD PLACE – a prize pack similar to last year’s trip! I guess the kids can make the trip with us this time. And, to prove that I didn’t put my name on all the tickets – we also have to congratulate the FIRST PLACE winner, with a hotel stay in Maui, Hawaii, a bunch of restaurant certificates and a $1000 gift card to help with flights – a package worth over $2500 – to our Crown Point friend – BRAD HENDRICKSON!!!! Congrats Brad – hope you enjoy your trip.
LAM Foundation Fundraiser - we're selling tickets! (2/11/11)
Each year the LAM Foundation has a big fundraiser with a silent auction and a raffle. Believe it or not, last year Danielle and I won the second prize and enjoyed a great mini-vacation in California. This year we are assisting in raising some much needed funds for research by helping sell tickets for the raffle. If you are interested and would like to help, please check out our Fundraising link for more information. Thanks for all your support and prayers!
ATS Conference in New Orleans! (5/26/11)
The ATS Conference wanted a patient speaker to talk for 5 minutes about their experience with Pulmonary Rehabilitation. My husband saw the request, noticed the conference was held in New Orleans, and pretty much volunteered me to do it (as obviously, it isn't something I would normally volunteer for on my own). In his defense he did ask first, but I didn't think they'd pick me and halfheartedly said sure. Well, imagine my surprise when I found out I was going to New Orleans to give a speech. YIPES! Then, when they were going over everything, the coordinator thought I would also fit in well for a longer 15 minute speech on having an acute lung injury and how it affects you and your family's lives. Well what do they say? In for a dime - in for a dollar, I figured if I'm going there anyway... why not? And if it would help bring more attention to LAM in front of researchers who actually might be able to treat or cure the disease, then I couldn't very well argue against it.
The 5 minute speech was the first one, and I could get through that one without a problem. It was just a little bit on my experience with Pulmonary Rehab, which was mainly a positive experience, and it really did help me learn how I can best exercise with LAM and my unique needs.
The longer 15 minute speech was next, and I never could get through the entire speech without becoming emotional. I was hoping with some practice I could get acclimated to it and get past that -- but apparently not! Anytime I talk about my kids and how this affects them and our family, I cry. (* sigh *) So I just had my kleenex up there with me, and I somehow got through the entire thing. Kenny said I did all right, but I think he's biased. :-)
We sat though a lot of doctor's presentations waiting to give my speeches. While
just about all of it was WAY over our heads, the basic idea was that they are
working on repairing lungs at the cellular level. Looking around the room during
their presentations complete with powerpoint slides, there were many doctors and
researchers nodding their heads and taking lots of notes.
We had several other days in New Orleans just to ourselves, and we had a lot of fun. We posted some pictures on our family blog on May 26, 2010 if you'd like to see them.
THANKS - 2nd Annual Breath of Hope LAM Charity Benefit! (11/10/09)
We'd like to thank all our friends and family for either attending or contributing to the fundraiser for LAM in Chicago: the 2nd Annual Breath of Hope LAM Charity Benefit. It was on Saturday, November 7, 2009. Kenny and I were there along with some great friends! The benefit was able to raise $56,000 (net) for the LAM Foundation, which was even over their goal of $50,000. How unbelievable is that! Thanks again to EVERYONE for their support.
The Benich Family