Considering starting a non-profit re: PA/TNA. - Need thoughts and input please.

Posted on: Mon, 04/16/2007 - 4:39am
Ethan Mom's picture
Joined: 03/27/2006 - 09:00

As some of you know, I am mom to a 4-yr old son who is highly allergic to peanuts and tree-nuts. Up until a few weeks ago, I worked full-time as a litigation attorney, but resigned from my law firm for numerous reasons, not the least of which was that due to my demanding work schedule, my son was spending 12+ hrs a day in day care! When he had his first anaphylactic reaction which required use of the Epi and emergency treatment, I decided it was time to re-evaluate.

So, long story short, I am in the process of mulling over my next career move and have been considering options other than the traditional practice of law. One idea I have been mulling over is the idea of starting a non-profit to educate about and/or raise funds for food allergy research. However, I don

Posted on: Mon, 04/16/2007 - 4:52am
Corvallis Mom's picture
Joined: 05/22/2001 - 09:00

There is a HUGE unmet need for legal advocacy regarding disability law and its application to LTFA. Rhonda does a pretty great job with some of this, but frankly, she's just one person. There is easily room for ten of her.
At the very least, you could fill a much needed area by educating special ed parent advocates about the nature of food allergies and their accomodation in a school setting. Sort of a clearinghouse of legal information.
I would think that the most effective strategy would be to investigate partnering with an existing agency which has an established reputation... but does not have the emphasis you are considering. For example, FAI, AAFA, and even FAAN do not really 'do' parent advocacy.
I think that there have been several recent threads that I have mentally noted where you might find additional 'partners' in this endeavor. I think that one of them might be one of Chanda's threads in the schools forum... there was an attorney's blog entry found by Ajasfolks.
Personally, there are more and more people who are MFA with a PA or SFA, so I don't know that advocacy which is specific to PA would be my first choice.... I mean, yes, there are people who are literally [i]only[/i] PA, but they seem to be less common than those who have several manifestations of atopy. In addition, those with MFA or EAs and asthma often need additional assistance because their needs are more complicated to handle in schools and workplaces.

Posted on: Mon, 04/16/2007 - 5:26am
Momcat's picture
Joined: 03/15/2005 - 09:00

Quote:Originally posted by Corvallis Mom:
[b]There is a HUGE unmet need for legal advocacy regarding disability law and its application to LTFA. [/b]
Agreed! I think this should be your focus, rather than specifically advocating for those with peanut allergy. Many of us have multiple food allergies.
What we need is a pool of affordable advocates who are familiar with case-law and disability law related to LTFA. We need access to basic information about Section 504 and the ADA. And we need to raise the awareness of the public and school districts about the legal rights of those with LTFA.
However, I don't think that you should start out by partnering with an existing non-profit. I think you should be free from the influence of these other organizations.
Here are my top legal issues:
Public school access (including schools run by DODEA)
Private school access (including religious schools)
Preschool access (public and private)
Access to camps/childcare
Consistent labeling laws for all food, beverages, drugs, supplements and cosmetics.
Mom to 7 yr old PA/TNA daughter and 4 yr old son who is allergic to eggs.
[This message has been edited by Momcat (edited April 16, 2007).]

Posted on: Mon, 04/16/2007 - 5:53am
McCobbre's picture
Joined: 04/16/2005 - 09:00

I have spent my entire career working in nonprofit organizations, from the very small, where I was the Executive Director and sole employee (who did all the development [fund raising], volunteer recruiting & training, and board development work, to a large organization with 230 employees. My area is development (fund raisng)--a key part of any nonprofit organization.
I might be able to shed some light from that perspective.
When I hear of folks wanting to start a nonprofit, I usually steer them in the direction of trying to work with an exisiting organization as CM suggested for several reasons that I'll make clear later.
I wouldn't worry so much about "influence," although that may be the concern about FAAN.
What I would worrry about is your concerns getting lobbed off in a budget cut--or just not making budget priority.
The reasons I would suggest to partner with an existing nonprofit is that you seem to have a concern about working twelve hour days. I get that, but even working in development in established organizations, I usually have a 50-60 hour work week (for those of you familiar with my commute, I'm NOT counting that here).
Starting up a nonprofit would be very time intensive. Seeking funding is hard work. Doing the research for funding takes time. You'll have a learning curve for writing grant proposals. You'll need to learn how to ask for money from individuals and to get comfortable doing that. You won't have a development person to do these things initially.
The real upside is that you're an attorney, and you have friends in those circles, and your start up costs will be cheap because you can draw up articles of incorporation and bylaws easily enough and have former colleagues do pro bono work for your organization. You've no doubt developed other contacts that will prove useful.
Here's what I think you should do:
Develop a basic mission and a business/marketing plan for your own organization.
Visit with some folks at your local United Way. If you have a a Center for NonProfit Management, take one or two classes. Attend the next monthly meeting of the Association of Fundraising Professionals (AFP) in your community, and make some connections there--and ask for meeting with some of your new friends to talk with them about the fund raising climate in your community, region (although you're really talking about something with a national scope, right)?.
What you're diong is your own scaled down "feasibility study" for the viability of this type of organization.
If you think that the mission can be best carried out on your own, go for it.
The next couple of months are going to be especially busy for me, but I'll be happy to chat if you need.

Posted on: Mon, 04/16/2007 - 5:56am
notnutty's picture
Joined: 03/15/2004 - 09:00

Ethan Mom: I understand your desire to start a different career free from the grind of the traditional law firm. I am not an attorney, but have been a paralegal (litigation and corporate law) in the past. I, too, quit to devote more time to my family. No more billable hours!!
I think it is a wonderful idea to start a NEW non-profit organization. I don't know if I would limit it to PA, but rather to navigate the legal system with food allergies in general. I have found the 504/school process to be very difficult to navigate and I consider myself to be fairly intelligent and capable, yet I have struggled to find and apply the legal issues involved.
If you decide to proceed and need some "assistance" I would be happy to help out.
Edit to fix spelling [img][/img]
[This message has been edited by notnutty (edited April 16, 2007).]

Posted on: Mon, 04/16/2007 - 7:45am
chanda4's picture
Joined: 12/14/2006 - 09:00

I second, or third...the vote for more help for those of us trying to navigate the school system and *attempting*(but finding it very difficult to battle the school over it) to get a 504! I have been up against my school now for a couple months. I've got the 504 drafted, but it sucks...bad! Our school is fighting me on every minor accommodation and I think it's because they know they can. What can I do?? I did call Rhonda, I am hoping she can shed some light. She is the *only* person I know who knows this if you're asking if there is a need for this...YYYYYEEEEESSSSS!!!! Good luck!
ps, just to answer your PA PN/TN child is also allergic to egg....then his brohter and sister have milk, so I would need someone able to handle *all* food allergies [img][/img]
Chanda(mother of 4)
Sidney-8 (beef and chocolate, grasses, molds, weeds, guinea pig & asthma)
Jake-6 (peanut, all tree nuts, eggs, trees, grasses, weeds, molds, cats, dogs, guinea pig & eczema & asthma)
Carson-3 1/2 (milk, soy, egg, beef and pork, cats, dog, guinea pig and EE)
Savannah-1 (milk and egg)

Posted on: Mon, 04/16/2007 - 10:21am
Peanut Militia's picture
Joined: 03/06/2007 - 09:00

My background is fundraising, advertising and promoting not-for-profit organizations (public service announcements and promoting through free print, T.V and radio broadcasts). As you develop your ideas, I would be happy to help--I have access to wonderful graphic artists, can probably re-strike access to video and audio production. I 100% think we need something besides FAAN. I also think we need more positive awarness that does not include a child dying and legislation to help LTFA so parents do not have to 'fight' the school in the first place. Email if you think I could help in any way.
By the way, I admire your life change for your child. I also became a SAHM when my child was first having problems--6 years later I am not sorry!!! I also know it is nice to still be a part of something--I hope you succeed with your idea. If it works it would mean so much to so many people--it is a gap that NEEDS to be filled! Too many of us have spent countless hours trying to learn 504 and IEHP lingo only to be shut down by a team of school board lawyers. I would so love the tide to change!!!!!

Posted on: Mon, 04/16/2007 - 10:33am
GinaC's picture
Joined: 11/11/2006 - 09:00

Hi Ethan's mom,
A group of moms in Seattle had some similar thoughts. Having food allergic children they wanted to do something to make a difference.
As you know, there is very little spent on food allergy research in comparision to many other diseases. (see [url=""][/url] they have a wonderful 12 minute video on this)
Anyway, these women approached the Food Allergy Initiative. [url="http://www.foodallergyinitiative."]www.foodallergyinitiative.[/url] org They are the major funders of food allergy research here in the US (and some outside as well) raising over 3 million over year.
They agreed that they would become FAI Northwest and raise money for FAI and then not have to worry about reviewing grant proposals etc.
The first event is in Seattle May 4th. There are several of us (advocate moms and support group leaders from across the country & Cananda) attending.
I want a cure or treatment and although I can work on advocacy issues here and rally my support group to help, I want to also financially support FAI since their mission is to find a cure!
One thing that I think "we" need is more of a blueprint to get food allergy school policy legislation in the states. Only a few states have this right now and I've heard that it is a challenge. It would be great if there were a national team to train, support, lobby and help the newbies learn the ropes when a state groups decide to pursue this.
Take care,

Posted on: Mon, 04/16/2007 - 11:12am
TwokidsNJ's picture
Joined: 05/28/2005 - 09:00

The non profit sounds like too much start up/grant writing/etc to me....
I think the biggest unmet needs are:
- 504/Advocacy Lawyers (like this Rhonda I hear about)
- A *national* food allergy policy (is that possible) similar to what MA and CT have (search google on "Managing Life Threatening Allergies in Schools")
- Another FAAN-like advocacy group that isn't afraid of bans. CANADA HAS IMPLEMENTED BANS SUCCESSFULLY and the US seems to be missing this important developement. I think they have REAL DATA showing the decrease in anaphalyxis in schools and someone needs to get this data and use it to change US policies, state by state or nationally. There is so much work to be done.

Posted on: Mon, 04/16/2007 - 12:46pm
gvmom's picture
Joined: 08/24/2005 - 09:00

I think a law that actually states that LTFA's are a disability would be nice for starters. Having to connect the dots with all the hidden disability stuff, is part of the problem. It starts to sound too convoluted and like you are grasping at straws instead of having true backing from the feds.

Posted on: Mon, 04/16/2007 - 12:53pm
Peanut Militia's picture
Joined: 03/06/2007 - 09:00

I have read most of your posts and am astonished how much we think alike-but-I think we need an ORGANIZED push for some of the issues you mentioned. I have searched the archives and change has come, but it is slow and only in some parts of the country for some people.
How do we channel our focus and punchout at least one of the issues you mentioned???
Is this the answer????????
Most of us are parents who are still living in shock of the world we live in after being diagnosed. How do we, as parents, caregivers, and all our other hats (504 advocates...) also make the drastic changes that are needed for PA/TNA? FAAN?? (quit laughing)
Ethan mom: Have you contacted Chris from this board and asked if there is room for what you are proposing here??


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