Update on Haley's condition
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I spoke with Haley's father this morning, and she is now free of stroke-like symptoms. She is responsive, mobile and acting like herself.
The family asked me to thank you all for your well wishes. They will be joining our chapter, and perhaps you will meet them at a future event.
The doctors are still figuring out what brought on Haley's sudden onset of non-responsiveness. Her father tells me the doctors are suspecting high blood pressure for these particular symptoms, and looking into what caused it. The long version is there are still mysteries to be solved, and the bottom line is Haley's condition is improved.
Her father is planning to come to the chapter meeting at Deli-Berry tonight to pick up some literature and speak with Meaghan. If any of you can go, I am sure they would welcome any insights into the Wegeners experience.
MEETING TONIGHT
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I am required elsewhere tonight, so the meeting will be facilitated by my daughter Meaghan, who most of have met at previous meetings.
Deli-Berry (www.deli-berry.com) is located at 2520 Juan Tabo Blvd NE. Just north of Menaul Blvd on the right side of the street. It is right in between to FedEx Office and a new Sprint store. They have some of the best frozen yogurt, and an assortment of healthy menu choices.
Deli-Berry may become a full time Vasculitis supporter!
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We are also in negotiations with Deli-Berry to set up a permanent awareness and fundraising presence in their restaurant, including a big poster, and a brochure rack on the counter. Those details are still in progress, but your support even now could help make a difference. If you go in there, tell them you read about Deli-Berry on the NMVasculitis website, and encourage the owners to become partners with the Vasculitis Foundation. Make Deli-Berry one of your favorite places to go, and soon you may also be able to support vasculitis research just by eating a sandwich, and a tasty frozen yogurt treat!
AWARENESS AND FUNDRAISING EVENT COMING UP NEXT MONTH
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In other news, on September 21st, our chapter will be represented at the kickoff picnic for a federal fundraising effort. The Combined Federal Campaign (CFC) was started in 1961 by President John F. Kennedy and is the only authorized solicitation of employees in the federal workplace for charitable organizations.
The Central & Northern New Mexico CFC serves over 23,000 employees in Bernalillo, Catron, Cibola, Colfax, Curry, De Baca, Guadalupe, Harding, Los Alamos, McKinley, Mora, Quay, Rio Arriba, Roosevelt, Sandoval, San Miguel, Santa Fe, Sierra , Socorro , Taos, Torrance, Union and Valencia Counties.
If you are reading this, let me say thank you to the many generous donors and federal employees who give of their time to conduct the campaign!
The VF was accepted this year to participate in the national campaign for the first time (you have to apply and be approved). The VF got approved for the Kansas City CFC two years ago because our national office is in Kansas City, Missouri. We were then able to leverage that to the national level.
VF Executive Director Joyce Kullman, said this to me, and it will apply to any of you who may choose to volunteer, "I really really appreciate you representing the VF. At the kickoff meetings in KC, we connected with several patients/family members who did NOT know we existed. We handed out brochures with the small labels with our CFC # 64445. It was amazing talking to all the federal employees at the kickoff. The goal is to get the employees to designate the VF for support. It comes directly out of their paycheck so it is very easy."
The federal employees have a special program where they get to choose which charities to donate money to, and the Vasculitis Foundation has arranged to be a part of it nationwide. The New Mexico chapter will go to the picnic to present information and answer questions.
There is only room for about four of us at the table. I am going, and Meaghan will likely also go. I would like to invite one or two of you to join me.
Even if you cannot go to this kickoff, keep this event in mind. If you or someone you know is a federal employee, please encourage them to designate all or a portion of their CFC donation to the Vasculitis Foundation! The VF CFC# is 64445.
Ideally, you would just show up and be prepared to speak about your experience with vasculitis. We will not be "asking for money," as much as simply sharing information persuading people how they can help by contributing funds to vasculitis research. If you are interested, then please contact me so we can talk more about how you can help.
Remember, if you ever miss a meeting, you can arrange to meet me anytime you want to talk. Just call me.
That is it for now. I will touch base with Meaghan tonight, and see if any of you went. It would really warm my heart if you do manage to go.
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Joseph Carpenter
Parent, daughter with CSS (DX March '08)
New Mexico Chapter Leader
Email, Fax, Phone and Postal mail: http://www.nmvasculitis.org/Home/about-cnmvf/contact
Central NM Vasculitis Foundation Chapter - http://www.nmvasculitis.org
Vasculitis Foundation - http://www.vasculitisfoundation.org
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