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2018 Top-Rated Nonprofit

International Association For Premenstrual Disorders (IAPMD)

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Nonprofit Overview

Causes: Health, Specifically Named Diseases

Mission: To provide women, trans-men, and non-binary assigned female at birth/AFAB communities with the education, support, resources, and tools necessary to live healthy lives, reduce interpersonal conflict, and eliminate self-harm.

Results: IAPMD began with the goal of providing representation, support, and advocacy to those affected by Premenstrual Dysphoria (PMDD). Since our formation in 2013, our organization has provided a place for women with PMDD to receive guidance in healthcare, symptom management, and coping skills.

Target demographics: anyone impacted by PMDD, PME, or Surgical Menopause

Direct beneficiaries per year: 8000+

Geographic areas served: Global

Programs: Awareness & Education, Peer Support & Crisis Intervention, TeleMental Health Services

Community Stories

36 Stories from Volunteers, Donors & Supporters

3

Client Served

Rating: 5

I have found their website to be an incredible resource that has made a huge difference to me and my family. So many free resources to help you research treatment options and make plans for how to get through the bad days. The peer support though is what really blew me away. On one particularly bad day where I felt totally desperate and I couldn't get a hold of my husband or my one supportive friend and felt like I was imploding, I contacted the peer support and within half an hour or less I was chatting online with someone who totally got it. Got me, got PMDD, got what I was going through and for the first time in my life said the right things! Said things that actually helped when I didn't know there was anything anyone could say to help. (I made sure to tell my husband exactly what those things were that night at home) That conversation is still with in me head on the bad days. I didn't choose this, this is not my fault, I have gotten through every other bad day I've had.... Phenomenal! And obviously easy to access as I wasn't capable of much that day. You can pick your preferred method of communication too. For an introvert like me who is a little socially awkward and uncomfortable on the phone chatting online was perfect. Thanks IAPMD! I don't feel so alone anymore.

Client Served

Rating: 5

Now 50, I've had problems with depression all of adult life. It wasn't until about five years ago that I finally understood that I have PMDD - and IAPMD were one of the key organisation's whose extremely clear information helped me get the right diagnosis and be my own advocate with medical professionals. I love their approach so much I'm now doing training to be a peer support volunteer with them. It's taken me a long time but they are so supportive I know I will get there and be able to help other people. Their approach is incredibly professional but also completely compassionate.

Volunteer

Rating: 5

This organization has been the only reliable source of information, tools and support that I was able to find on this disorder.
It helped me to finally understood what i was going through, to be able to explain it to my partner, my family, and to find a treatment that just totally changed my life.
I couldnt be more grateful!
Thats who i decided to start volunteering with them to help and bring support to other women.

Client Served

Rating: 5

IAPMD has literally turned my life around. I was so lost and completely unaware that there was such a thing as PMDD until I found IAPMD and that it wasn't me going crazy after all. I was so happy to learn that it was a place in which I could get vital information for my GP and just as importantly, peer support for myself at my low points. I'm so grateful to each and every one of the workers and volunteers that give their time to help people in need.

Hajnal V.

Donor

Rating: 5

I donated. Thank you for bringing this invisible monster to light.
I suffered with PMDD brain disorder since I was 16. Stopped professional speed skating as first. Thanks to the birth control pill I could finish my university studies. But I lost my "spirit", went dull and dumb. I more than love music, but at the age of 25 I stopped listening to any music, I just couldn't handle diving deep in myself. I would not have survived the mirror music gave me of the shadow I have become. Every first 2 weeks of my period I stood up and tried to "fix" my life. And then ovulation hit me. Again and again and again. I would fall every month. And stay knocked out until my menstruation came.
After my thirtieth birthday I've got severe physical pains as well. And hormon related debilitating migraines. At the age of 34 I have got the diagnosis PMDD and the message that nothing can be done about it. I begged them to take my uterus and ovaries because my brain reacts badly to my own hormones. It was not done in The Netherlands to take a "healthy" organs out of me though these organs were producing a chemical which made my brain shut down. My ovaries were killing me.
The transformation from the high performance skater and highly educated person to the shadow who was hiding in her house was a long and painful one.
The physical symptoms went worse every year and became so debilitating that there were months when I was two weeks bedridden. I stopped standing up and trying to fix my life. Spent the last years upstairs, cuddling my rescue dogs and listening to Eckhart Tolle. Practicing surrender and was waiting for the menopause.
But the transition to post menopause is hell for women with PMDD.
Than in an attempt to get at least a break from menstruating, I reached out for help by a gynecologist at the age of 44 and asked him if there are any drugs that would shut my system down for at least 3 month.
He immediately put me on Zoladex, an injection that inhibits the function of the ovaries.
After more than 30 years of falling sng getting up I started to get involved in activities and actually finish them!!!
The same gynecologist prescribed me the surgery: at the 4th of December 2019 they took out my uterus and ovaries. What a relief, peacefulness and joy! Oh, I listen to music (love you, Freddie Mercury ), picked up jogging, I live. Though I don't know how I supposed to hahaha, because I have severe trauma from not living sooo long. But I am learning. Picked up jogging. Some day I will run for Pmdd, too.
For my daughter and all the women who are suffering. Or committed suicide.
I survived because of my loving family. For my husband and daughter.
And all the rescues. Who actually rescued me. I am the rescue actually.
Trying to clean the clutter what I gathered in these years of PMDD.
Now officially I am in surgical menopause, which is a chronic disease. So I need hormone replacement therapy (the good ones) and of course I have some symptoms. But it is a walk in the park compared with the 30 years of PMDD.
I will never find out how my life would have been if the medical world acted earlier.
But I take what is left from what is left from my life and live it fully.

1 Jason A.5

General Member of the Public

Rating: 4

At first it was pure relief. My wife’s mood and behavior was so erratic and so well bizarre. How could such a loving gentle person suddenly turn into such an angry and vicious beast- but now I had the answer PMDD. I stumbled onto it by accident - as i started a journal and when I correlated my journal entries I saw that her volatility was in fact as predictable as the sun rising and setting. More digging with my old friend google and she was no longer Jekyl and Hyde - she was now a patient suffering a terrible terrible ailment. Now that we had a name for our pain we could seek a solution. At the very least - and this is no small mercy - we had ruled out bat sh*t crazy. This was where the relief comes. Ladies you are NOT crazy you are merely having what I consider to be an allergic reaction to hormones your bodies produce as part of your cycles. That’s the good news - here is the bad news - it doesn’t get better with age- it gets worse - and knowing that you are not crazy doesn’t make it hurt any less.

I kept asking WHY does PMDD get worse with age? If the body is producing less hormones as we age why is her allergic reaction seemingly getting worse. I asked google and google gave me an idea. Testosterone.
Female production of testosterone falls far more precipitously than their production of other hormones and the decline typically begins in their 20s. My wife’s symptoms began to really get bad in her late 30s and became truly unbearable in her early 40s. The symptoms of low testosterone - well, almost identical to PMDD - so my wife got tested and her testosterone level was low. Her doctor suggested testosterone pellets and handed her a brochure- my wife didn’t even glance at the brochure - she looked in the docs eyes and said

“I’d like the pellets now please-Right now “

The Dr then cautioned
that it requires an incision to which my wife very firmly declared that she didn’t care if it required a hammer.

The results ?? PMDD is pretty much gone- her symptoms are a fraction of what they were- only been a few months but she’s her old happy self. The fogginess, the confusion, the blurred vision even the squeaky voice - all gone.

I don’t know if our situation is just dumb luck or whether we’ve stumbled onto a cure - but I don’t care - but I did want to share our experience.

To
Women suffering from PMMD I am so so sorry - your pain is REAL your experience is REAL - for the men that suffer with you - don’t you dare doubt your woman - no matter how hard she is to be around it’s NOT HER FAULT and it’s NOT HER CHOICE that she has this disease.

1 Cinnie

Volunteer

Rating: 5

Where do I even begin to express my gratitude and experience with this wonderful organization? I finally got diagnosed with PMDD in 2017, and it was an emotional experience. I was angry at my Doctors for not listening to me when I brought them a checklist of symptoms that linked suicidal thoughts and crippling anxiety to menstruation, but they said it was all in my head or it doesn't exist. I cried and grieved for the years lost, the relationships I had broken and the opportunities that slipped past my fingers because of PMDD. I had quit schools and jobs because PMDD was affecting my life and I didn't even know it. The day I was diagnosed I devoted my time to join support groups, research websites and came across IAPMD which was the Gia Allemand Foundation at the time. I cried when I saw they had a peer support line because a crisis line had saved my life before and to see they had this for those suffering from PMDD and PME made my heart happy. At first, I wanted to do the social media volunteer, but destiny had other plans for me to become a peer support provider, and I don't regret it at all. As the month's pass I saw these fantastic people running this organization and volunteering their time despite having PMDD, and other health issues amazed me. Their selflessness, hard work, and kindness just blew me away, and I was part of that. This organization and my job as a peer support provider gave me the confidence that PMDD took away from me. I'm currently a Wellness Management student to become a health educator which my specialty will be menstrually related mood disorders. I believe awareness and education will help and prevent women from committing suicide, get the proper treatments and diagnosis, and give them the knowledge they need to be their own health advocates and teach health care professionals about this little-known disorder. I'm excited to grow with this organization and thank you for the resources, and education you provide to the world.

Client Served

Rating: 5

This organisation has put me in touch with women like myself all around the world. I am so grateful for their love at bad times and advise, I have never rescieved such support for my disorder in my whole 45yrs and I am hugely glad of it now to help me through the days and month

General Member of the Public

Rating: 5

This organization is an amazing place where very committed and dedicated people work for a cause that is so important to fight for. It is a place where all the information you need regarding this illness is stored and checked by real experts and professionals.

I have used their information a lot to share knowledge about PMDD in my own country too (Italy), where the lack of visibility of this disorder is huge.

They are helping people worldwide not just in the States,by promoting knowledge and extending support to women in difficulty and their families.

Thank you so much for all your passionate work.

Paola Vallarino - Italy

General Member of the Public

Rating: 5

I only recently discovered this association existed and it’s already shone a huge ray of hope into my life. One of the only things worse than suffering a disorder is suffering a disorder that is very little studied and often not acknowledged. Knowing that this support is here and that I’m not alone - never mind being able to turn here for questions I have- has changed a lot for me. Thanks so much, keep doing all that you do. Much love and god bless

Professional with expertise in this field

Rating: 5

My daughter's journey with PMDD led us to IAPMD. We had an idea for a symptom and treatment tracking app (Me v PMDD)...the organization had the trust and support of the PMDD community. They welcomed us in with open arms! Today, both my daughter and I are a part of the IAPMD family - as a peer supporter and on the board of directors, respectively. The exciting thing about IAPMD is that it is poised at a unique moment in time where #MeToo and Time’s Up meets mental health awareness meets suicide prevention. Empowered by this increasing awareness around gender disparity and critical health issues, IAPMD has started a new movement - a global movement of millions of people who have Premenstrual Dysphoric Disorder (PMDD) and premenstrual exacerbation (PME) - to accelerate the progress being made around the world on premenstrual disorders and PMDD in particular. IAPMD has spearheaded a groundswell of people, raising their voices and growing the conversation to make an impact on how the general population, medical professionals and sufferers see this life-threatening condition! I'm thrilled to be a part of this vibrant and growing organization!

Professional with expertise in this field

Rating: 5

As a clinician and scientist with expertise in premenstrual mood disorders, I can confidently state that this is the most important global resource available for individuals with premenstrual disorders. Unfortunately, most doctors and other health professionals remain ignorant about the diagnosis and treatment of premenstrual disorders. Where these institutions fail, IAPMD picks up the slack, helping women get connected with the support and education they need to seek effective care. The foundation has been a pleasure to work with; they are always interested in the latest research and they do a fantastic job of engaging patients, clinicians, and scientists.

General Member of the Public

Rating: 5

Personally, I do not suffer from PMDD. However, I am a nurse practitioner who was interesting in learning more about this topic. My Colleagues and I attended the 2018 PMDD Annual Conference held this past May 2018 in Boca Raton, Florida. The presenters were quite knowledgeable about the symptoms and treatment of PMDD. As a health care provider, I felt that the information presented was insightful and valuable to my practice. I would definitely encourage other healthcare providers especially those practicing women's health to attend future PMDD conferences.

Laura M.8

Board Member

Rating: 5

When I first started finding out about PMDD - the website was (and still is!) the most useful resource. As a sufferer, to have clear, PMDD specific information, written by people who understand how it to feels to be on the patient side of the desk was just amazing!

I have since become involved with IAPMD - first by volunteering and then as a Board Member. We keep patients at the centre of everything we do - because we were (and often still are!) those PMDD patients. We know how it feels to be desperate, we know how it feels to be unheard, we know how it feels to be at rock bottom every month.

It's an exciting time to be involved in the Association as we go through a period of growth and change!

Client Served

Rating: 5

While experiencing symptoms of PMDD I searched online for PMDD information and discovered this organization. Miraculously they were having a conference in my state a few months later. I signed up immediately and discovered women who had gone through what I had and offered so many resources. This organization is such a blessing to those of us out here struggling alone and isolated. It's a community making sure others in our situation have the "light bulb moment" sooner rather than later and getting us the most up-to-date research. I don't know how much longer I could have gone on prior to my diagnosis and I was so lucky to find a doctor that knew what PMDD was and diagnosis me. With diagnosis leads to hope. This organization leads to community, connection, and solutions. I am forever grateful.

1 Adrienne P.2

Volunteer

Rating: 5

I was diagnosed with PMDD in 2014 and in 2016 found the Gia Allemand Foundation, now IAPMD, as the best resource available for accurate and up-to-date information about PMDD. IAPMD has connected me with services that fill the gaps in the current health-care system and provided me with a network of individuals who have been informed, supportive, and helpful along each step of my struggle with mental illness. IAPMD also provided me with an avenue as a volunteer mental health advocate after PMDD prevented me from working in the mental health field full-time, turning me into a productive volunteer at a time when there weren't avenues to be a productive individual in the traditional employment sense. I am very grateful to have found IAPMD.

Brett B.1

Professional with expertise in this field

Rating: 5

The Gia Allemand Foundation is an amazing organization that has already helped 1000s of people with PMDD (Premenstrual Dysphoric Disorder) find information and support. They have so much potential to grow even more and further advocate for PMDD awareness, research, and treatment. They're saving lives and leading a movement.

1

Client Served

Rating: 5

Gia Allemand Foundation has helped me so much, as there is much support when it is needed. The Foundation also helps woman by mentoring them to become stronger empowered individuals. I don't know what I would do without it, it has personally saved my life! Thank you for all that you do!

Client Served

Rating: 5

Having community while suffering with a little talked about issue is amazing

Professional with expertise in this field

Rating: 5

I have been presenting the PMDD at the ICNM International congress of Naturopathy médicine in London last weekend. I have been a PMDD women for about 30 years, I am a Naturopathe in France and during my presentation, I gave many solutions to better the life of these women and informations relating to this pathology. Lots of attendees, doctors haven't heard about it. It is time to spread the word ! I have sent articles to dozen of french magasines, only one published me, in return a few women called me crying by finding out what was wrong with them and knowing there were solutions ! I am very glad I have found this foundation and added it to my power point. Hopefully, it will create a ripple effect! cheer!