Raising awareness

This is just a quick reminder that I have some great methods of simultaneously raising both Chiari awareness as well as funds for patient assistance and research for a cure.

For more than 3 years, all profits from my Chiari wristbands have gone to Wishes & Rainbows--a 501(c)(3)--for patient assistance (medical travel, medical bills, emergency utility assistance due to hospitalizations, etc). They are dark purple, 100% silicone, and are embossed with CURE CHIARI. The silicone allows them to stretch beyond the hand so they can fit properly on the wrist; they are in the style of the LiveStrong ones made famous by Lance Armstrong's cancer foundation, and are a great way to raise awareness in the community!

I have two sizes for adults-- 7" (this most popular seller is for small and average framed women, small-framed men, and most teens), 8" (for larger framed women, average framed men, and larger framed teens), and a limited amount of small child size at 5 3/4".

Wristbands are 2.00 each and have a 2.00 shipping cost no matter how large the order; if the shipping cost goes over 2.00 I will cover the difference. Insurance is optional for customers to purchase to cover the package after it leaves my hands. Please include with orders how many of each size you would like.

I can accept PayPal and personal check; wristbands are shipped within 1 business day of PayPal payment, and within 1 business day of personal check clearing.

Feel free to contact me with any questions.


While I'm here I'm going to do some shameless plugs. Christmas Day will be my CafePress Chiari/Syringomyelia store's 3rd anniversary. It's hard to believe it's been that long! I designed all the items there and 100% of the profit goes to the Research Fund at the American Syringomyelia Alliance Project, also known as ASAP, a 501(c)(3). I have a design for everyone: CM and/or SM patients, Chiari 0 CMers, family members and friends, people of all ages including infants, clothing, stickers, magnets, pins, tote bags, etc. It's worth checking out.

Post-Op Update, awareness items vs the economy

Later this week I'll be 2 months post-op from the artery surgery.

In terms of surgical healing, it's going pretty well. The incision is closed and looking good. The left side of my neck, jaw, shoulder, that entire region just aches all the time. It's not anything that is concerning and I'm sure will continue to improve, given adequate time with the Ehlers-Danlos.

My pain issues, artery region aside, have not changed. I am taking more measures immediately after I get off work at 10 a.m. to try to prevent the pain from becoming completely over the edge by evening since it always worsens as the day goes by.

I am due to have an MRI next month to check on the growth that's pushing in my cerebellum and shoving it back down my spine. It can't be done any earlier since I'm not far enough out of surgery to get a real accurate look.

For the last two months or so, I have really noticed the impact the economy is having on my Chiari/SM awareness items sales. My CURE CHIARI awareness embossed wristbands sales are definitely low. The website sales (Chiari, Chiari 0 (zero) Herniation, and Syringomyelia awareness items) are low as well BUT things are still moving, just at a snail's pace. I know things will pick up at some point but I feel badly for not being able to donate as much to the American Syringomyelia Alliance Project and Wishes & Rainbows. It will get better though!

DS's Babette blanket is coming along well. Today I began work on Panel 9 so if I round up any amount of self-discipline, the rest of the squares should be completed in about two weeks. The contest is going well too; as of now I'm in the top 10 (out of 307) for vote ranking, though not quite as high in the page view rating. I just keep thinking of all the preemie and newborn caps I could make for little NICU babies with a prize gift card from the yarn manufacturer! Thank you to everyone who has voted so far! The contest goes until February 25 or so.

I'm attaching some pictures I've taken the last few days, just thought I'd share.

Loss of a great man

This is near and dear to my heart, doing committee work at ASAP. They are a tremendous group, providing major funding and grants to Chiari and Syringomyelia research:

Don White, Co-Founder & Chair Emeritus Passes Away

It is with great sadness that we inform you that Don White, Co-founder and Chair Emeritus of ASAP, passed away on January 02, 2008.

Together with his wife, Barbara, Don founded ASAP in 1988. Frustrated by a lack of information and confusion after Barbara's diagnosis, they vowed to bring awareness to these little known disorders. It was their dream that no person would face a diagnosis of SM or CM alone.

Although Barbara became quadriplegic and succumbed to complications that led to her death in 1991, Don remained committed to their mission. Even while battling cancer, Don's devotion to ASAP was so strong that he continued to regularly attend board meetings.

He once said, "There was no ASAP for Barbara and me, and we were determined to do something about it. We believed then and I still believe now, that ASAP can and does make a difference in the lives of those affected by Chiari and syringomyelia."

ASAP extends our sincere sympathy to the family and friends of Don White. It has been an honor to share in the life and mission of this remarkable man. Because of his efforts, SM and CM are becoming better recognized, and our awareness and understanding of the disorders continues to increase. He has made a profound impact on the lives of many.

As we embark on our 20th year anniversary, the ASAP family is more committed than ever to seeing the organization carry on until the mission is fulfilled and a cure is found.

A memorial fund in Don's name has been established. Donations to this fund may be made to ASAP on-line or by mail:

Don White Memorial Fund

Babette blanket FINISHED!

I had one extra skein of sea foam and needed another salmon to complete the border so I made the exchange at Purl's this week. Tonight I finished DD's blanket! It is so soft and the salmon-kind of color as the border is her favorite. She doesn't know yet that it is hers. It's been such a therapeutic process to crochet this blanket.



While I'm here I'm going to do some shameless plugs. Christmas Day will be my CafePress Chiari/Syringomyelia store's 3rd anniversary. It's hard to believe it's been that long! I designed all the items there and 100% of the profit goes to the Research Fund at the American Syringomyelia Alliance Project, also known as ASAP, a 501(c)(3). I have a design for everyone: CM and/or SM patients, Chiari 0 CMers, family members and friends, people of all ages including infants, clothing, stickers, magnets, pins, tote bags, etc. It's worth checking out.





I also still have my CURE CHIARI wristband project going for another outstanding 501(c)(3), Wishes and Rainbows, to assist them in helping patients with their expenses. The wristbands are dark purple, have CURE CHIARI embossed on them, are 100% silicone to stretch past the hand to fit comfortably on the wrist. Unlike the majority of wristbands out there, I have 3 different sizes. 7" fits teenagers, average-framed women, and small-framed men. 8" fits large-framed women and average-framed men. I also have a small amount of 5 3/4" for very young children. They are 2.00 each. All profits go to W&R to help patients with immediate needs. If you would like to purchase a bracelet feel free to contact me via comment or email. It's a great way to spread awareness to the public and show support!



I also wanted to let you know about GoodSearch, which is a great search engine. They donate one cent per search to ASAP. Simply select American Syringomyelia Alliance Project in the box by the yellow buttons. (One of these buttons also allows you to see how much money was raised per month!) If you just enter Syringomyelia then the foundation name will pop up. You can make a difference! Consider adding GoodSearch to your favorites or making it your homepage.