Tags: donation

You can continue to support NAF when shopping at Schwan's

Link: https://www.schwans-cares.com/campaigns/18377-research-education-and-support-for-ataxia

Recently, there had been a fundraising campaign where Schwan’s was donating 20% of purchases made from January 30th, 2015 to March 16th, 2015 to NAF (National Ataxia Foundation) for research, education and support for Ataxia.

I had intended for years and years, about sometime after I had moved away from where one of my friends drove for them. But, I just never worked up to doing it. But, now that I’m less mobile, it seems my freeze has become somewhat bare and there are other things I wish I had on hand, but never seem to get. Though I had done frozen food by UPS from other online places in the past, but those places have come and gone.

So, I had every intention of placing an order before the NAF conference, but as time past….I ran out of time. Wasn’t sure how long it ran after the conference, but intended to do it first thing….though when I saw that I had until March 16th, I didn’t feel as rushed. Except life continued to happen, and suddenly found myself forcing myself to finally do it on March 15th.

Just moments ago, I was curious to see how the campaign ended….since the goal was to raise $5000, and before my order it was only $270…guess it came to a bit under $300. But also found this note:

You can continue support NAF when shop with Schwan’s

Thank you for your support of this campaign! NAF’s fundraising campaign period for the “Research, Education, and Support for Ataxia” has ended but NAF will continue to earn 5% until January 30, 2016. You can continue support NAF when shop with Schwan’s through this campaign page. Your continued support is very appreciated!

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Sleep Apnea disqualifies you from being a bone marrow donor?

Somebody pointed out that having Sleep Apnea disqualifies you from joining/staying in the National Bone Marrow Registry.

Even though they say 80% of marrow donations are done using an apheresis (think plasma or platelet donations)....

The explanation is:

Patient and donor safety is our top priority. Donor guidelines are developed by our Donor and Patient Safety Monitoring Committee. The committee is made up of medical directors from NMDP donor, transplant, apheresis and collection centers, a donor and a patient.

The primary risk associated with sleep apnea is related to marrow collection, which is a surgical procedure. Registry members must be able to donate either marrow or peripheral blood stem cells, depending on the needs of the patient.

Regulating anesthesia is more difficult in patients with breathing. After surgery, marrow donors may require narcotic pain medication, which can further depress breathing. In patients with sleep apnea, even a small amount of anesthetic sedation can cause decreased airflow.

Despite the risk, some registry members express their willingness to assume the risk in order to help a patient. While the NMDP appreciates the courage and compassion that motivates them, it would be unethical for the NMDP to allow donors to do so.

To learn about other way to help patients and their families, visit http://www.marrow.org/HELP/index.html?src=tabinvolved

Of course, the explanation then raises the question of other disorders, such as narcolepsy and/or idiopathic hypersomnia....who also can respond differently to anesthetic or pain meds.

Regarding your questions about narcolepsy or idiopathic hypersomnia disqualifying a donor, it would best be considered on a case-by-case basis to determine the extent to which it affected breathing, and what impact it might have on the ability to donate.

So, there you have it...if you have sleep apnea, they tell you to go away... But, if you have some other condition of similar or greater risk...they'll let you in....because not waking up from anesthetic is okay if you keep breathing? Though one also wonders if they fully understand what sleep apnea can be?

Swinging for Sleep Campaign With Nicole Jeray

Link: https://www.narcolepsynetwork.org/get-involved/swinging-for-sleep/

Narcolepsy Network has teamed up with long time loyal Narcolepsy Network member and golf superstar, Nicole Jeray, LPGA Touring Pro. Narcolepsy Network is soliciting your support for a unique fundraising endeavor, “Swinging for Sleep”.

Jazz Pharmaceuticals will donate $25 for every birdie that Nicole makes on tour. And, you can pledge any amount you wish to also donate for every birdie that Nicole makes on tour. Or, just make a one-time donation of your choosing.

Personally, I've pledged $0.50 for each birdie.... :cool: