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Power Lifting Meet 2005

Lynch Public School Gym
Lynch, Nebraska

Although we are still adding up the money raised, I wanted to write and send some information and pics relating to the Sixth Annual Lynch High School Powerlifting Championships and Aicardi Syndrome Big Bench Challenge. It is estimated that we raised about $1500-2000. In addition, Barb and Theresa made quilts that were raffled off.

Some highlights from this year’s meet:

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baseball winner

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Boys big bench winner

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Diller/Odell team with Regan

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fleece quilt winner

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Girls big bench winner

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Judges with Regan

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Lincoln Lutheran Teamp>

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Lynch bencher

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Lynch lifter

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Lynch lifter with medals

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Lynch Team with Regan

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Lynch’s girls champions

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Woodward Academy Team

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shirt sales

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winner of football

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some of our helpers

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scoring table

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our spotters and loaders

Fall Fundraiser

We had the great privilege of attending the Costandi/Maher family’s Fall Fun Day fundraiser for Aicardi syndrome and the American Cancer Society last weekend! It was really a wonderful time for everyone. Sharon and Paul Costandi organized the event with lots of help from family and friends.

We arrived in the early afternoon to beautiful warm and sunny weather, and the activities were already well underway. The Maher’s (Sharon’s sister and brother-in-law) hosted the event, and we were astonished at the number of cars neatly lined up in their front yard — there must have been at least 50 cars. Out back were moonwalks and carnival games for the kids, tables and tables of raffles, more food than you can imagine (including the world’s best cookies, made by Sharon’s mother), hayrides, pumpkins, and a clown. Ursula basically dissappeared into the moonwalks, only to emerge periodically to breathlessly ask for more food or something to drink. Astrid loved the attention that was showered upon her, especially by those who had known Jenna. Astrid even spent some time in the moonwalk being bounced around by the other kids (while carefully held by her daddy). Astrid and Ursula were both all smiles all day, and all of the kids there were clearly having tons of fun. We all took a very picturesque hayride through the neighboring countryside, with a stop at a local cider mill. Near the end of the day, Sharon delivered a very moving speech about the importance of fundraising and supporting our girls.

This really was a very fun day, and I’m so appreciative of folks like Sharon, Paul, and their family who put forth so much effort to raise funds for our cause!! The turnout was great, and I’m sure the day was a big success. I’m attaching a few pictures that we took during the day to hopefully give you a feel for what a great day it was. The people behind the sign are the ones responsible for putting on the fundraiser, and a big thank-you to all of them!

Ande, mother of Astrid (5, AS), Ursula (3), and “Squeebie” (due Nov)

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Benefit Concert

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Our first annual ASF benefit concert was a great success, it was our first time and we managed to raise over $7,000 – Wow! I know. We are already making plans for our 2nd concert next year.

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We guesstimate about 200+ people attended. “Frankie Goes to Englewood” and “Supernova” were great bands and people said they really enjoyed the day and festivities. Smokey the Bear was a hit with the kids and adults alike. The hot dogs, hamburgers, hot pretzels, ice cream sandwiches, plus a huge bake-sale table made the day a yummy affair.

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We had several nice prizes to give away during our “Tootsie Roll Challenge” and the “Twizler Twist”. Spa visits, tanning salon gift certificates, carpet cleaning, tattoo gift certificate, (3) different four-star restaurants donated dinner for two, and many local small businesses donated things like ice cream cakes, flowers, gift baskets and dinner at various local deli’s and restaurants.

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Two families from New Jersey and their daughters with AS were able to come to the concert. The Pope family with their daughter Haley from Verona, and the Donald family with their daughter Hillary from BuddLake. It was great to meet two families so near to us.

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All in all it was a wonderful day, and all our hard work paid off. We are delighted and proud to have raised funds for the Aicardi Syndrome Foundation and our AS daughters.

Hope to see more families next year!

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Fall Fun Day

October 7, 2006

On behalf of the family of Jenna Costandi we would like to thank everyone for their continued support over the past 5 years in raising funds for the Aicardi Syndrome Foundation. The Fall Fun Day raised over $7,000!

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Shrinking Violets CD Fundraiser

Benefiting the Aicardi Syndrome group

Each CD ordered is $16.50–$7.50 of which will be donated to the group ($1.50 for supplies & postage, additional postage required if shipping outside of the U.S.) by Darryl and Julia Murdock. As soon as your payment is received, your order will be mailed to you. Please mail payment to:

Pamela Drake
5101 Owteway Place
Wilmington, NC 28409
These CDs make great gifts and half of the proceeds will be donated to our Aicardi Syndrome group!

Please buy a CD (or two, or three, or more!)–the music is great for all ages and supports the best cause of all–our girls!

Thank you for your support!

Pam Drake

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About Shrinking Violets…
Continuing to move ever forward, Shrinking Violets recently released their 2nd CD, “Fragile.” Over 8 years in the making, Fragile provides a look at Shrinking Violets’ life and observations.

Since their beginnings in 1993, Darryl and Julia Murdock completed their partnership by marrying in 1997. They have wandered throughout the Northeast, gracing such stages as Night Eagle Café and Coffeehouse in Oxford, NY and Caffe Lena’s in Saratoga Springs, NY. They have an instantly recognizable, yet undefinable singer/songwriter style that can best be described as ‘jazzy acoustic folk pop’. Both Darryl and Julia are classically trained and experienced in performing for many types of audiences.

Since their humble beginning in a small graduate student club in Syracuse, the Violets have built a solid following for themselves in Upstate and Central New York and in Vermont. With their tight vocal harmonies, the driving sound of acoustic guitar, and the uniqueness of sweet-sounding viola, they have successfully sold their audiences on their songwriting efforts. Their on-stage storytelling and light, good-natured banter engages the audience. Their songs are unpretentious, very listenable, and have been called ‘as comfortable as a soft flannel shirt.’

Their debut CD, “Let It Rain,” was included as one of the top ten new releases of 1995 by the Syracuse Herald Journal. Larry Hoyt of the Syracuse New Times called Julia’s voice “.beautifully pure with a soft, soothing quality,” and the Herald Journal’s CNY feature writer Mark Bialzak described Darryl’s guitar playing as “right on.” They have made live radio appearances on several Central New York shows including Dave Frisina’s “Soundcheck” on 95X, TK99’s Homegrown radio network, the State Theatre Radio Hour hosted by Gene Ira Katz on I-100, and Common Threads on 88.3 WAER. Their song “Not Ready to Let You Go” was included on the State Theatre Radio Show Compilation CD, released in June of 1996, where it keeps company with songs from such groups as Karen Savoca of the Mind’s Eye, and Donna the Buffalo.

In 1997 Shrinking Violets were nominated as Best Acoustic Act of 1997 by the Syracuse Area Music Awards (SAMMYs). They have expanded their range to include shows in Massachusetts, Ohio, Maine and Canada. Invited to perform at the North by Northeast Conference and Festival, they played to a packed house at the Free Times Café in Toronto. Headlining at Caffe Lena’s, the oldest running coffeehouse in America, was a dream realized for the Violets as they played on a stage where artists such as Bob Dylan and Tom Chapin have performed. They have opened for the legendary Tom Rush as well as new folk luminaries Vance Gilbert and Ellis Paul.

Perhaps the highest compliment for the Violets came from Mr. and Mrs. Joe Barnes of Ballston Spa, NY, who, after buying a CD at a Shrinking Violets performance, wrote a letter of thanks to the group. They said they thoroughly enjoyed the music, but it was especially appreciated by their two small daughters who had memorized the lyrics and danced and sang whenever it was played. Their list of venues, press clippings, and fresh, original songs is still growing, and they will continue to create a warm, festive atmosphere wherever they play.

www.shrinkingviolets.org

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Comments from families who have already purchased:
I received the CD today from Pam’s brother. It is GREAT!, very relaxing music. I put it in right away and listened while I made lunch. The AS sticker is on the cellophane wrapper around the case so I cut it out and put it inside the case so everyone playing it could see that it was there for Jenni. Hope all who ordered this enjoys it as much as I did. When Jenni gets home this afternoon, I am going to put it on for her. Have a great day, God Bless.

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We received the cd the other day, we enjoyed the music and think that they are very talented. Its relaxing I wish that I had a cd player in my car. the fund raiser was a really nice idea we greatly appreciate it.

ps. is there any time limit on placing future orders?

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I received the CD yesterday and we have been listening to it all morning. We love it! I knew I would like it because its folk music, but I didn’t think that my husband would enjoy it (he’s all about rock n roll!) but he does!! And lets not forget our daughter, she was dancing away to it. Thank your brother and sister-in-law for their fundraising efforts.

Aicardi Angel Jewelry

www.aicardijewelery.com

About Us:
I am the mother to Bridget, who was diagnosed with Aicardi Syndrome at 10 weeks old. We were not given any hope for our child to even hold her head up at the time of diagnosis. Three years later she is walking on her own.

Some Aicardi Angels will never walk, some may never speak, many will be confined to a wheel chair. Some will only be with us here on earth for a short time, but no matter the length of their stay, our lives will never be the same. The uniqueness of each Aicardi Angel is a special gift bestowed on her family. Each family learns to accept this gift, deal with the incredible challenges and persevere, none of which is easy. The rarity of the syndrome makes it difficult to diagnose and treat. The parents have become the experts. The families unite through the AS Foundation and share information ranging from therapy and seizure medicines to (at one point inconceivable) milestones and birthday parties. The families have come together to encourage, support and help each other.

Aicardi Angel Jewelry:
I have been working with a jewelry designer for the past year to create a symbol of hope that we can wear proudly as well as raise funds for the Aicardi Syndrome (AS) Foundation. The design is based on the Foundation’s silhouette, the daughter of the founders. Each piece is hand crafted in 100% solid sterling silver with a blackened satin finish (the finish may vary). The delicate face of the angel elevates from the pendant to showcase her beauty. The words “Aicardi Angel” lie beneath the angel. A genuine cultured pink pearl dangles from the bottom of each piece. Unique by nature, I chose to add a pearl which signifies purity and pink because this syndrome mostly afflicts girls.

Donation:
The profit from the jewelry sales will be donated to the Aicardi Syndrome Foundation to help further research as well as help affected families. To learn more about Aicardi Syndrome or to donate directly go to: www.aicardisyndrome.org

Customer Service:
If you are not completely satisfied with your purchase please return the item and I will refund your money within 30 days. If you have any questions, please contact me directly at aicardiangel@gmail.com
Thanks for your support!

Kate Sullivan
aicardiangel@gmail.com

The easiest way to order is online at: www.aicardijewelery.com

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Mail-in orders will be accepted. Please print out an order form and mail it to the address at the bottom of form.

Julia

Julia tried Keppra for a few months. It seemed to improve her mood initially. In fact, we called it happy juice. However, as we increased the dosage, she seemed to have more seizures, especially myoclonic jerks. While she was on Keppra, she was also on Depakote and Zonegran, so it may have just been a bad combination, but we did wean the Keppra and the seizures decreased and she was more alert.

Emma

Dear Friends,

There has been some discussion, again, about the use of ACTH to stop seizures. For those of you who have known me as Emma’s mom and the “newsletter lady” for awhile, please stop reading NOW…!

My daughter, Emma, was on ACTH as well a number of years ago. But more importantly than that, after reading your letters and gathering information for the surveys, etc. as well as talking to Dr. Aicardi specifically about using ACTH with our girls, I feel compelled to respond to the ACTH issue.

Journal literature definitely support the use of ACTH to stop infantile spasms in the general population of infants with that type of seizure. However, when you talk about using ACTH with girls who have Aicardi Syndrome, the results are significantly different. While it is true that ACTH HAS been effective in a small number of girls with Aicardi syndrome, I believe that still, in the main, the drug is NOT effective in stopping the seizures. There are some girls who, while on ACTH, have had either decreased seizures (most of this group) OR eliminated seizures (few of this group). The problem is that in nearly 100% of the girls, the seizures return after the child is weaned off the ACTH, which must happen as ACTH is a steroid and therefore a short-term therapy for seizure control.

Keeping this in mind, the BAD news about this therapy is that the girls gain a LOT of weight because ACTH is, again, a steroid. And they are extremely irritable on this drug. Colic times ten hundred. Dr. Aicardi himself does not recommend this course of treatment because of the negative side effects and also the possibility of respiratory complications.

We are beginning the process of putting together a new survey of member families, and it would be prudent at this point, I think, to include a separate section on the survey about the administration of ACTH. Seizures are a part of our girls lives. Period. End of story. I do hate to be so matter-of-fact about it because I can still remember Emma as an infant and how deeply distressed her father and I were watching her seize. That feeling never really goes away, I’m sorry to say, although we do get lots better at dealing with it. But I also believe that sometimes in our efforts to eliminate seizures from our girls lives ~ a rather futile effort for most of us ~ we can compromise the quality of our daughter’s lives.

Please forgive this lengthy soap-box display. Each of our daughters are their own individual human beings and the best we can do is to trust our instincts about doing what is best for them.

I hope this has been helpful in some way.

Denise Park Parsons, Mom to Emma and Katherine

Anna

Diastat is the only other medication that we use at present. We resisted using it until May of 2002, but Anna began having a type of seizure which builds in intensity like ocean waves which get stronger with each new wave, and Diastat is all that stands between us and the ER (we’ve nicknamed these events “Superseizures”.) We give Anna a 5 mg. dose shortly (5-10 minutes) after the seizure starts and a second one (rarely) 5-10 minutes or so after the first dose, if necessary. Giving the dose fairly quickly after a seizure starts seems to be the key to how effective it will be in stopping the progression of the seizure. The real trick for us is telling if it’s a Superseizure or a run-of-the-mill Grand Mal-tonic/clonic type of seizure (our usual tip-off is if she makes a gagging sound.) Diastat quickly loses effectiveness if used very often, so we only use it when absolutely necessary. I’ve noticed on this LISTSERV that there is a wide variance among the dosages (from 2.5 to 10 mg) taken by our girls; Anna weighs 71 lbs. and her dose is low (especially when her age and weight is factored in) compared what some neuros prescribe. Diastat was developed to minimize the respiratory impairment caused by Valium which was one of the status intervention drugs-of-choice before the development of Diastat and Ativan/Lorazepam, so it’s fairly safe.

Extensive FDA information about Zonegran, Diastat, and almost every other med can be found at this link: http://www.fda.gov/cder/consumerinfo/DEFAULT.HTM

RD (father of Anna, 12)

Carlie Rae

Hello! My name is Kelly Keys I have met some of you, but I don’t always keep in touch. Between my own business & my husband’s it keeps me pretty busy. My daughter is CarlieRae she is 10 & will be 11 in march. We tried acth when Carlie was 10 weeks old. At first it stopped all of the seizuresfor about three weeks. In that first three weeks life was great beside her rapid weight Gain. She gained 22lbs in those weeks,but she was more alert. Then in the fourth week all of our probelms started. The seizures came back worse than before. Her breathing became labored. Her reflux was really bad,so bad she started aspirating. Which in turn made her lungs even worse. They started giving her lassix to try & get rid of the fluid weight she gained. Which in turn gave her kidney stones really bad.To make a really long story short it was the start of hundreds of new medical probelms.I started off before the acth with a baby with only seizures. To a baby with a feeding tube,oxygen, suctioning, many medicines & aalot of hospital stays. Which down the road lead into a three year old child with a trach , ventilator 24 hours a day, four g-tube surgeries, 24 hour tube feedings due to sugar probelms, a permanant iv line to draw blood and give iv antibiotics, an ileostomy and still 15-20 seizures a day lasting 5-35 minutes in length. So for three weeks of good, We got 10 years of fighting for carlie’s life. One minute she can be fine & the next in critical condition. If i had it all to do over again I would haave taken longer to investigate ACTH. I would never suggest anyone take the chance I did with my daughter for three good weeks. I hope this helps. God Bless all.

Kelly Keys

CarlieRae10

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