Dignity, Self Sufficiency and Safety...PRICELESS!

Earlier this week I posted Why does fundraising for ALS matter...really? I received some feedback that the story got lost in all of the gadget photos. So I decided to separate them. I just adore technology!!!


Dignity, Self Sufficiency and Safety may be priceless, but they DO come at a cost. That's where each and every donor hero comes in! Yep...you are (or can be!) a Donor Hero. And trust me...that too is priceless! Please understand that ANY donation, no matter the size is put to good use by any number of organizations serving patients and families with ALS, such as Augies Quest, ALSTDI, ALS of Michigan, or the ALS Recovery Fund. Bill and I were blessed to be associated with the ALS Association Greater Bay Area Chapter. But there are many others - use GoodSearch or Google to find an organization near you. BTW, GoodSearch is a great way to donate "passively" to the organization of your choice! 

Here are a few of the zillions of ways your donations and fundraising efforts can help a family living with ALS:


A $25 donation allows a patient DIGNITY and SELF SUFFICIENCY.

Built up utensils, straw holder, scoop plate and a grip cup allow an adult to feed themselves

 
A Button/zipper pull and a key turner allow independent dressing and access to the home

A $50 donation purchases SAFETY...Bathroom grab bars and a shower chair retain independence and safety around the toilet and shower. A Gait Belt allows a caregiver to safely transfer a patient from bed to chair and back, protecting their back and retaining safe control of the patient.

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  $1 per day Provides speech amplifiers for those whose voices are now too faint to be heard. or Helps a family transport their loved one to a clinic visit. or Offers an hour of a Chapter Care Manager’s expertise.
  
  
  
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  ALSTDI estimates that it takes $100 to fund 1 minute (60 seconds!) of ALS specific research. Remember we still don’t know what causes ALS which means we cannot begin to find a cure for ALS.
  
  
  
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  A $500 donation allows an ALS specialized Regional Care Manager to do their job for 1 week. Every day, our Care Managers assist patients by recommending community resources for financial/emotional support, securing appointments for power wheelchairs, providing recommendations for in-home care, recommending speech devices, reviewing physical therapy techniques, checking in on a patient who lives independently, delivering educational presentations to a wide variety of audiences, coordinating equipment loans/transfers between patients and vendors, and so much more.
  
  
  
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  $1000 supports specialized care at an ALS certified clinic, where patients see a battery of specifically trained medical professionals – Neurologist, nurse, occupational therapist, respiratory therapist, speech pathologist, physical therapist, social worker, augmentative communication specialist, and physical therapist. Consider that these costs are not always covered by insurance!
  
  
  
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  $2000 supports the MDA's Durable Medical Equipment program - specifically the grants for motorized wheelchairs, enhancing mobility and independence
  
  
  

How have you been supported by an ALS organization?  Please give a shout out to the heros that help make each day a tiny bit better. Thank you in advance for your generosity. Together, we can make a difference. But it WILL take all of us. 

Why does fundraising for ALS matter....really?

For the next ten minutes, I’d like to have you “unplug”, read and absorb the following words. After reading the next few paragraphs, please close your eyes and really paint this picture in your mind. Ready?


You and your family have decided to enjoy a beautiful, sunny day at the local beach. You pack your picnic basket and enjoy the drive. You have laughed watching your children dig a rather large hole in the wet sand. You think to yourself, this was a great idea…it’s so good to get out, enjoy the sun and watch their joyful play!! After much pleading, coaxing and cajoling, you agree to be buried in their sandy pit. Before long, one child has been working at your feet. They are now covered with wet sand and you can’t get away. In the meantime, another child has been dumping buckets of wet sand onto your left arm, and pretty soon, you can wave to your spouse with your right arm and shout out that you are having fun. The children see progress and several other children join in so they can quicken their pace! Pretty soon, your left arm is buried and they are making good progress covering your legs, hips, waist, chest and finally your shoulders. Now…only your head is visible.

You know exactly what is happening, and it is quickly apparent that you are at the full and complete mercy of your children! And, by the way, remember the sand is wet, so it’s heavy on your chest, and you realize that it’s getting a little difficult to breathe. Your stomach growls and you convince the children to bring you some fruit and something to drink. You instinctively reach out to get your snack, only to discover that your hands are useless, you are truly not capable of feeding yourself. Your children laugh and scamper off to chase the waves. You cannot move and you know it.

At some point, you have convinced your children – via pleading or threats of death before their next birthday – to dig you out. It takes a bit, but you are free and the only sign of your ordeal, is that you are covered with sand, which is quickly washed away by a quick dip in the water. You are once again fully functional and independent. For an ALS patient, there is no gleeful option to “dig them out”.

Tomorrow, as you (without assistance) get out of bed, stretch, eat your cereal, take your shower, get dressed, walk to your car, enjoy your Starbucks®, curse your allergies and blow your nose, go about your busy workday, navigate the traffic home, take the dog for a quick walk, enjoy a glass of wine with a juicy steak, hold your children as you read their bedtime story, bend over and pull up the covers to tuck them in, brush/floss your teeth, use the toilet, take your medications, put on your pajamas, climb into bed, read for 10 or 15 minutes, kiss your spouse, reach up and turn out the lights…please think back to the beach scene and consider that EVERY 90 minutes, of every day, ALS claims 2. Someone will get an ALS diagnosis and start the descent into the sand pit of complete dependence on a family of caregivers. And one will die from complications of ALS, usually because they can no longer breathe.
Now…again with the beach scene firmly in your mind and, because you can, I ask that you take the following three steps. Make a difference for the hundreds of families living with ALS who are served by the ALS Association in your community.

1. Put on your tennies or ride your bike for a wheelchair bound patient in one of the Walks/Rides to Defeat ALS to be held around the US this fall. Please click http://web.alsa.org/site/PageServer?pagename=WLK_BP_stateselect to find the most convenient ride/walk and sign up today. While the economy struggles to get back onto its feet, consider that most ALS patients are trying to do the same and need your help – today more than ever. There are a number of examples below which will help you understand the safety, dignity and independence your generosity provides. I recommend a monthly donation of $5, $10, $25, $50, $100 or more (whatever your budget allows).
2. In addition to your personal donation, make a commitment to raise $250. In the advanced stages, care for an ALS patient can reach $250,000 annually. In the early stages of the disease, your donation can buy independence, safety and respite for a patient or their family members.
3. Pass this message along to everyone in your address book. Share it with friends, family, neighbors, co-workers, schoolmates, teachers, and local business owners….everyone within your sphere of influence and ask them to join you on the walk and to make the fundraising commitment.

Thank you!

CA Income Tax Check-off initiative update

As part of the stack of bills introduced and signed into law by Governor Schwarzenegger late last year, a tax credit check-off box benefiting ALS research was added to the 2008 CA State income tax return. Initially, the bill was not scheduled to go into effect until the 2009 tax year. However, thanks to some very quick action taken by the Franchise Tax Board, CA taxpayers were able to make a difference, one year early!

The 896 early birds who filed in January 2009 designated $8,630 toward ALS research. Avg donation per filer was $9.63

Through March, 8000+ taxpayers had designated $86,154 to the fund. The average donation thru March was $10.76 per return.

April filers were even more generous!! 6240 Californians checked the ALS box and an additional $76,931 was directed to the research fund. Avg. donation on the April returns: $12.33!

So....the totals for the 2008 tax season are: 14,248 returns, with an average donation of $11.45 per return, for a grand total of $163,085 designated for research. Hard times always seem to bring out the best in people, and it’s amazing (and gratifying!) to see how quickly it all adds up!

You can check our progress, by clicking the following link to the contribution report: http://www.ftb.ca.gov/individuals/vcfsr/reports/023.pdf

PS: If you filed an extension...please remember to "check the ALS box" when you file your return.