News
The Raising Rare Boys Raffle launches today, October 1st. Please consider buying a raffle ticket for a Louis Vuitton Neverfull handbag or a Blackstone grill or both.
All proceeds from the raffle will go to funding Hunter Syndrome research!
We're very grateful. We're very thankful for all of your love and support of our family as we bravely take on Hunter Syndrome. There isn't adequate funding for research. While we have our hands and our hearts full with just fighting this regressive disease, we realized we have to do our part of support research. Only those who really care, who really take a special interest in our children and Hunter Syndrome can make a difference in improving the lives of the adults and children effected by this disease.
Thank you: https://www.youtube.com/watch?v=vyeGfyzYWMI
Have you seen the Medium post written by Amy Cherrstrom our President & Co-Founder of Raising Rare Boys? Thank you for as always for your support of the mission of Raising Rare Boys.
Read it here: https://medium.com/@acherrstrom/design-thinking-a-rare-disease-to-its-death-96a9e070a7e3
Results for the 2017 Long Drive II Survive Hunter Syndrome will be posted here. Check this board after 1:00 p.m. Eastern on November 26 for the results.
Team Jack:
Carpenter 146.2, 142.6
Devine, N 175.7
Jereb 177.9, 146.8, 153.7, 128.7
Mohr 145.6, 150.7, 156.5, 176.8
Tredway 133.4, 176.0, 167.4,159.3
Jamieson 152.3, 157.8, 147.6, 155.6
Graven 167.6
Heffernan, 175.2, 165.2, 129.3, 148.6
Bollenbach 100.9
Devine D & K 159.0, 136.4, 181.7, 113.4
Team Nick
Bongard 23.4, 22.7
Carter 41.2, 34.8
Devine, B 12.6, 35.2
Gelber 30.7
Trevino 36.5
Belas, 30.9, 24.0, 47.7
Cherrstrom 45.1, 40.5, 57.1, 53.1
Heffernan J & B 44.8, 44.0, 22.3, 40.1
Schmitz 37.5,29.0
Wilson 41.5, 20,9
Caras 26.0, 38.8
Koenig 25.1, 46.8, 32.6, 15.8
Team Alex
Bigane 21.6, 10.6,35.3, 17.2
Cole 31.1, 24.5
Cherrstrom, C & J 44.6, 21.4, 22.0
Gelber, J 22.2
Fong, 25.7, 20.8, 51.1,42.7
Hecei 20.4
Hickman 34.5
Swanson 18.6, 57.3
It's not a secret! Nicholas loves bacon! Every single hospital visit, every month he looks forward to seeing the bacon chef at every hospital! It's the way he comforts himself, and frankly keeps some weight on his body.
We love Nicholas! In honor of him we worked with a great graphic designer, and a local, popular T-shirt company to print the "Bacon Power" shirt! 100% of the T-shirt sales will go to fund MPS II Research (Hunter Syndrome)! We've been sending our research funds to Nationwide Children's Hospital to help gene therapy research move forward. We really need a clinical trial to start soon. Many of the children with Hunter Syndrome continue to decline with no treatment options to treat their central nervous system (CNS). Research holds great promise!
You can support this research by buying a T-shirt here:
A heartfelt thank you for helping us defy the odds in 2016! Watch our thank you video! Happy New Year to all!
ICYMI: Nick turned 6 this month too! Our letter to Nick: http://raisingrareboys.blogspot.com/2016/12/on-your-birthday.html
If you have followed our story, it is well known that Nicholas loves bacon. Today on #GivingTuesday, we were actually out of bacon in our house. Like us, you work hard for your bacon. If you are giving for #GivingTuesday, please consider giving to us. We're working hard to bring gene therapy to a reality. This research up to this point has been primarily supported by parent-led fundraising efforts. If we don't support the early stages of this research, it simply won't happen and that would be a tragedy not only for our children but so many others affected by Hunter Syndrome.
Thank you for considering us when giving your precious bacon out today! Donations can be made here: http://www.raisingrareboys.org/take-action
Bacon Forever,
The Cherrstrom Family
On the blog: The lover of pork fat, the Ambassador of Porklandia, champion of all bacon chefs, the bravest man this side of the pork shoulder...
http://raisingrareboys.blogspot.com/2016/11/nicholas-bacon.html?m=1
Check for Live Long Drive II Survive Hunter Syndrome results here for Team Jack!
Results will be reported as your name, yardage ball 1, yardage ball 2...
Bollenbach 83, 105, 48, 61
Cherrstrom (C&J) 111, 118, 127, 137, 90
Crawford 121, 134
Devine (D&K) 110, 169, 134, 134
Heffernan (M) 143, 132
Johnson 144, 147
Koenig 133, 91, 133, 95
Nelson (Buds) 91, 65, 127, 104
Schmitz 68, 134
Searles 150
Swanson 136, 111
Trevino 133, 117, 140, 152
Live Leaderboard for Team Nick!! Check here for live stats as measurements come in!
Bigane 62, 59, 58, 38, 41
Bilardo 36, 67
Carpenter 33, 29
Devine (L&K) 35, 53, 44, 51
Hecei 77
Heffernan, J 32, 60, 47, 68
Hojdar 52, 43
Jamieson 69, 31
Jones, J 44
Mohr 51, 42, 68, 49
Omura 59, 62
Vasilevski 38
While the Long Drive Competition is in progress, you'll be able to check this post for live updates.
Bongard, 37
Caras 54, 65
Chapman, 18
Cherrstrom (M&S) 31, 44
Devine, B 18, 63
Fletcher 30, 45
Graven-Gelber 43, 27, 23, 49
Jones, B 45, 66, 50, 45
Knowles 39, 20
Rathburn 70
Rivera 64, 47
Sulzer 51
Wilson 57
Thank you so much for your donations for the 2016 Long Drive II Survive Hunter Syndrome! All donors have been assigned a golfer. We are so excited to hit and publish the results on our leaderboard! See any errors or want to switch teams, send me an email on raisingrareboys@gmail.com. Thanks for all of the love and support!
Today is the last day to make a donation to be included in our Long Drive II Survive Hunter Syndrome competition. We'll publish donor assignments for your specific golfer and announce when you can follow the long drive competition results. How to make a donation can be found here: http://www.raisingrareboys.org/long-drive-1/
Thank you so much for all of your support! Let's drive out Hunter Syndrome! xoxo
Look for more details this week as we launch our annual fundraiser to fund research to treat and cure MPS II, Hunter Syndrome!
How does it work? You make a donation. Your donation qualifies you for a certain number of golf balls in the competition. Your donation is assigned to one of our boys who hits the ball for you. The farthest drive by each boy wins a customized price suited to your location, and interests! A win for us, a win for MPS and a win for our winners!
What kind of impact does my donation have?
Your donation will go directly to fund research in Ohio focused on gene therapy for MPS II, Hunter Syndrome. 100% of your donation will go toward that research. All prizes and costs of running our fundraiser are self funded out of our personal funds. Each year this helps us build our research fund to advance critical treatments and make them (hopefully) available in our boys lifetimes.
What if I don't want to be in the competition but I want to make a donation? We are recognized as a 503c charity, and your donation is fully tax deductible. If you want to avoid any fees for making an electronic donation, you can mail us a donation to our PO Box. We'll send you a tax receipt acknowledging your donation. Details can be found here: http://www.raisingrareboys.org/take-action/
We can't thank you enough for all of your support and donations! The boys have been practicing their golf skills regularly and they've got great distance on their drives! It's going to be a great competition and one they love!
Thank you,
The Cherrstrom Family
It's on! The boys will compete on November 1st!
All donors have been assigned to one of our boys to drive the ball on behalf of the donor! Check back here on or after November 1st for the results! We'll contact each winner, each boy will have one winner! Thank you again for your generous support to help us save our boys.
Thank you so much to everyone who gave us such generous donations! We are touched by your support! 100% of every donation is going to fund gene therapy research to move this research to its first human trials! The best part is it's all happening here in Ohio. The researchers are at Nationwide Children's Hospital. With your donations, we know you've placed tremendous trust in us and we are committed to helping gene therapy become a reality! We're aligning with other Hunter Syndrome charities and families to make this happen!
The date of the Long Drive Competition will be announced soon! It's going to happen in the next few weeks! We're watching the weather and the course conditions. We'll have a live leader board so that you'll be able to follow along with the action! Shortly we'll announce the date, the final donation tally and which boy will drive the ball on your behalf! We're also gathering some awesome prizes and will have some surprises in store!
Thank you again for your support,
Raising Rare Boys
Thank you so much for your generosity! Here's how each boy is doing...
Jack has 6 golf balls to drive and $600 USD raised.
Alex has 3 golf balls to drive and $100 USD raised.
Nick has 3 golf balls to drive and $100 USD raised.
100% of your donations will go to Gene Therapy Research! Currently excellent progress is being made at Nationwide Children's Hospital in Columbus, Ohio around MPS II Gene Therapy Research. It's critical that we support research. Many researchers run out of money or find their projects unfunded, and this research leads to breakthroughs.
Thank you for supporting us! The boys love the day of the long drive competition when they get to drive for you! We'll provide drive yardage and a leader board the day of, and announce the date they'll be on the course!
Our only fundraiser of 2015 is scheduled to start on September 15th and end on October 15th! Make a donation to our Raising Rare Boys, a public charity, Tax Id, 47-3507795. Your donation will enter you into our virtual long drive competition!
Donations up to $25 will receive 1 ball in the competition.
Donations up to $50 will receive 2 balls in the competition.
Donations of $75 and over will get 3 balls in the competition.
Each of our boys, Jack, Nicholas, and Alex will receive a donor's name to drive the ball on that donor's behalf! Our boys love golf! They're ready to go!
Each boy will have one winner, the donor whose ball is driven the farthest. Since we had global participants last year, each of the boy's winners will receive a prize package customized for them!
All proceeds from this fundraiser will go to support research to help treat and cure Hunter Syndrome, including supporting the recent exciting developments in gene therapy!
Thank you in advance for your support!
