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IBD Shorts. I have a lot to say but not enough time. Frustrations, Exciting Research, Traveling with IBD.
Frustrated and Working Hard to Raise Money and Awareness for IBD
I feel like I am working very hard to raise money for IBD research to keep our donations to our beneficiaries at the level that they are used to. I feel like I’m working very hard to connect with the needs of patients and families coping with Crohn’s disease and ulcerative colitis. I feel like I’m working very hard to raise awareness about these diseases, which will help bring in more funds and reach more people who are in need. I have been feeling like something is missing, like there is money and help out there, but I’m having a hard time accessing it. Sometimes I want to scream at the top of my lungs that we are here, that Connecting to Cure Crohn’s and Colitis has been here for over 10 years, and we are a grassroots organization with very little expenses, and the money we raise has made a huge impact on the IBD community. Maybe you can tell that I feel a little frustrated about getting our message across. I keep going back to the ice bucket challenge for ALS several years ago, and how viral that went. Obviously, there are so many diseases and conditions that need attention and ALS is devastating. It’s not that I want to do something that has to be as widespread as that, but Crohn’s and colitis are so invisible, so misunderstood, so underfunded, and people don’t realize how debilitating they can be for a large percentage of patients, especially those that have severe disease. Especially for people who were diagnosed under age 6, it tends to be more aggressive. It is not only the patient that has to live with the unpredictable quality of these lifelong illnesses, but family life is forced to change course if a loved one is diagnosed. For parents, for moms, the caregiver burnout, stress and eventually their own health problems, are very common. Yes, it’s true that some people have mild to moderate disease, respond to medications, and even if they’ve had surgery, they continue to have a healthy life and I am happy that not everyone with IBD is affected so severely. But unfortunately, it’s a fact that some people struggle more because medications don’t work or they’ve had complications from surgery or any number of things including access to the care that they need, equity issues, and so much more. I am not citing science or statistics here, but you can look them up. Most of the medications available have a less than 50% chance of inducing remission. Ok, rant over.
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Press
Forbes
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Feeling Good About Rocking the Night with Jakob Dylan and Jim James
By Tom Teicholz , CONTRIBUTOR
April 20, 2018
If you go to enough concerts (and even if you don’t) you long for the experience of seeing big name acts playing a small club and having a great time in a room that’s neither so crowded that you can’t walk up to the front, nor so loud that you can’t hear yourself think, where the drinks and food are excellent, plenty and free. A place where there is merch that is rare and exclusive and a good value to boot. How about all that and feeling good and righteous for being there? Feeling as you are doing some good in the world, and contributing to helping others who are suffering? Click here to read more.
Forbes
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With Jakob Dylan & Friends, Everyone's a Rock Star at Connecting to Cure's 'Rock The Night'
By Tom Teicholz , CONTRIBUTOR
March 20, 2017
One of the best concerts I go to each year, one of my favorite nights of music all year, “Rock The Night,” is a benefit for Connecting to Cure Crohn’s and Colitis, a Los Angeles based charity founded by Stacy Dylan and Dana Zatulove, at which Jakob Dylan and other artists, such as Jade Castrinos and Butch Walker, and occasional surprise guests such as Stephen Stills (2015) or Cat Power(2016) play solo and together, performing their own songs and covers.I'm a paragraph. Click here to add your own text and edit me. It's easy.
Teen Helps People with Crohn's disease
losangeles.cbslocal.com
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Ani Rosen, a friend of Connecting to Cure Crohn's and Colitis, is living with Crohn's disease, but giving back at the same time, raising awareness and money to find a cure and making sure no one with Crohn's or other conditions like it ever feels alone.
The Comerica Bank Women's Business Award
February 28th, 2017
The Comerica Bank Women’s Business Awards Program recognizes women in leadership in Southern California, in tribute to their contributions. This year Stacy Dylan was given the award for Woman of Philanthropy: Recognizing women who are changing our local community for the better. Stacy was presented an award along with three other women before the Laker game at the Staples Center.
Blog by Tom Teicholz
April 26, 2016
Last weekend in Los Angeles, when all the teens and the people who still think they are teens were at Coachella, the legendary Troubadour nightclub in West Hollywood was, nonetheless sold out for an amazing show and a great cause. Jakob Dylan, Jade and Cat Power performed at “Rock The Night,” the 5th annual charity benefit for Connecting to Cure Crohn’s and Colitis, a non-profit that funds research to find new treatments and a cure for these terrible gastrointestinal diseases.
The Troubadour is the legendary rock club that birthed the Laurel Canyon sound. It’s where The Byrds first performed, Buffalo Springfield and Joni Mitchell made their debuts. Neil Young and Elton John made their U.S. debuts there. Where James Taylor performed with Carole King and learned how to play her song “You’ve got a friend.” Where Glenn Frey and Don Henley were the backup band for Linda Rondstadt. It is a small club and to see Jakob Dylan and Cat Power there was a real treat - one well worth attending next year (tickets sell out fast).
Connecting to Cure was founded by Stacy Dylan and Dana Zatulove who both have children who suffer from these diseases - Stacy spoke of the good humor, bravery of her son and how he would just “like to do the things normal kids do: like going to school and not being so tired.” At the event, Joshua Greer and Courntey Steiner, adults involved with the organization, spoke of their trials, travails and how they have managed to live with the potentially debilitating symptoms and disease.Dr. Marla Dubinsky of New York’s Mt. Sinai Medical Center spoke of the advances that are occurring and that she hopes will be occurring in developing more individualized treatments for children suffering from these diseases.
Another good reason to attend is the silent auction which always features some great rock and roll memorabilia, including some choice Bob Dylan items such as a signed lyric sheet to “Knocking on Heaven’s Door” and a signed copy of “Chronicles Volume One) (which, personally, would be my dream item - but it was beyond my budget).
Jakob Dylan has been recently mining 60s and early 70s California songs for an upcoming album. Performing with Jade Castrinos (of Edward Sharpe and the Magnetic Zeros). They performed songs such as “Go Where You Want to Go” by the Mamas and Papas, The Association’s “Never My Love,” Trace Adkins’ “I’m Going to Love You Anyway,” as well as songs by Buffalo Springfield, and the Monkees. One forgets that when Jakob Dylan was starting out and performed regularly at Canter’s Kibbitz room, he played lots of covers and plays them well.
Cat Power performed a short set which included “The Greatest.” I had seen Cat Power perform two years ago at the Hollywood Bowl (opening for the Pixies) and it was not a great performance - too many people, too distracted. Here, at the Troubadour, in a room of fans, she reminded me of Patti Smith, in terms of her emotional honesty and ability to make the room part of her world. It was a great performance.
Jakob Dylan returned to perform The Turtles’ “You Showed Me” which has been playing on select radio stations such as KCSN 88.5 (which was also a media sponsor of the event). Jakob Dylan then performed some of his own original songs such as “One Headlight,” “Love is a Country,” and “Nothing but The Whole Wide World.”
One of the annual running jokes, now a tradition, is that as Stacy is a devoted Springsteen fan, Jakob offers up a different Springsteen cover each year. This year, he did too, “I’m on Fire” and “Fire” and acquitted himself excellently.
Frankly, this was a performance well worth paying for. The fact that it helps fund a great organization to fight a terrible diseases, makes it all the more worth doing.
JEWISH JOURNAL
This Mom Is Rockin’ the Cause for Crohn’s Disease
by Avishay Artsy, Contributing Writer
January, 3, 2015
A couple of years after her son Lowell was born, he was having severe stomach pains, and Stacy Dylan knew it might be serious.
She found out Lowell has Crohn’s disease, a chronic inflammatory condition of the gastrointestinal tract that’s especially likely to affect Ashkenazi Jews.
Lowell is now 14, and taking care of him, her younger of her two children, is “a full-time job and more,” Dylan said. His care requires special diets and monitoring, along with “dealing with tutors, doctors, specialists, massage therapists, hypnotherapists. I’m basically a case manager, mom and a cook.”
Dylan, now 47, has immersed herself not only in caring for Lowell, but also in helping others with the condition. In 2010, she entered her first half-marathon to help raise money for the Crohn’s & Colitis Foundation of America. While training, she met Dana Zatulove, whose son Brian had been diagnosed with ulcerative colitis — a condition that causes swelling in the lining of the large intestine — when he was 8. Together, in 2012, the two mothers co-founded the nonprofit Connecting to Cure Crohn’s and Colitis.
About 1.6 million Americans suffer from Crohn’s disease or ulcerative colitis. Current research is looking at how genes may influence the intestinal bacteria that triggers inflammatory bowel diseases. Although they’re not considered fatal, some people do die from the diseases.
“The two main reasons we started the charity were to promote awareness and reach a different demographic than other organizations related to Crohn’s and colitis do, and to raise money for research,” Dylan said.
In February 2013, Lowell underwent a surgical procedure that led to a perforated bowel and emergency surgery. Because of complications, he needed a PICC line (peripherally inserted central catheter — a catheter inserted in a peripheral vein in the arm) for a year to feed him intravenously.
That led to dramatic weight loss and time away from school, his mother said. “There’s a lot of medication to treat Crohn’s and colitis. We started with the one with the least side effects. We’ve been on every single medication, and either they don’t work, or work for a little while, or have too many side effects,” she said.
Lowell is currently trying a new medication, and the family is waiting to see whether it’s effective. There’s an emotional toll from all this, which is why Dylan is so committed to raising money for research.
Dylan and Zatulove also have distinguished themselves with fundraisers different from typical ones — their next rock benefit show will be in April at the Troubadour in West Hollywood, and, for the fourth year in a row, the headliner will be Jakob Dylan, lead singer and songwriter for The Wallflowers. Jakob’s brother is Stacy’s husband (and Lowell’s dad), Samuel Dylan, and both are the sons of Stacy’s father-in-law, Bob Dylan.
“When she talks about Crohn’s and colitis, or her nonprofit, her passion comes out,” said Lesley Bloom, admission director at Pressman Academy at Temple Beth Am, and a board member of Connecting to Cure Crohn’s and Colitis. “Her face lights up. I don’t know how she does it, but she absorbs all this information regarding the diseases, and puts it together and makes you believe that every penny you give helps the cause.”
All three of Bloom’s children have been diagnosed with Crohn’s, and the two families’ boys play baseball together at Cheviot Hills Park. “We’re friends, but we have a bond because our children suffer from chronic illness,” Bloom said. “And you’ll do anything to help them. You can’t take it away from your children or child, so raising money makes you feel like you’re doing something to help.”
Dylan’s nonprofit is looking to build a peer-to-peer network, to connect parents who’ve been dealing with inflammatory bowel diseases for years to those whose kids are newly diagnosed. The plan is to expand her small, informal support group of Los Angeles-area parents.
Another goal is to raise awareness of how such diseases affect all family members. “My brother was born with a birth defect, hydrocephalus [a buildup of fluid inside the skull that leads to brain swelling.] I was the sibling who didn’t get a lot of attention. I was fine; I didn’t need it,” Dylan said. But, she said, she’s aware of the needs of her oldest son, Jonah, who is 17. “I try to be sensitive to not having him feel left out, and I went to help other families navigate that,” she said.
Her own background includes working as a marriage and family therapist, which helps with her nonprofit work, she said. “I feel really strongly about patient advocacy, because I’ve have had a lot of experience dealing with doctors and schools and insurance companies. It’s a difficult situation when you’re trying to deal with all these people as well as with your sick child, and they don’t understand,” Dylan said. “It’s important to share your experience and tell your story.”
Rock the Night to Cure Crohn’s and Colitis will be held on April 18 at 7 p.m. at the Troubadour, 9081 Santa Monica Blvd., West Hollywood. For more information, visit connectingtocure.org.
ABC News
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